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Adult CVS


Thoughts on CVS

I write this with some trepidation, and my fingers crossed. I haven't had an episode of nausea and vomiting since the end of January. Is it because I'm taking amitriptyline or just coincidence? CVS seems to have a mind of its own, raising its ugly head when least expected. I have had times when the episodes have been quite frequent, regular and severe. During these times it's very difficult not to worry about how and when the next episode will occur. It's very difficult to come out of this cycle, and it can have a major impact on one's quality of life. However there is hope; as and when the frequency and duration of the episodes decreases, the all consuming thoughts of dread for the next attack do become less.
I have been taking amitriptyline for approximately 2 years and have recently, on the advice of a doctor at the hospital, increased the dose to 20 mgs. I don't like the side effects, but they are preferable to an episode of CVS. I believe the drug has made a difference for me.

I read an article recently which began with these words. "If there's one thing guaranteed to rile my friend it's people referring to migraine as just headache". These words made me want to read on. It could have been referring to an episode of CVS, and how people perceive it. "It's just being sick, it will soon pass". Oh we wish. Interestingly a professor's key advice to migraine sufferers is similar to that given to us at a recent family day by Richard Boles M.D..
He advises to even out the highs and lows in your life; he highlights regular sleep, regular exercise, regular meals, and even not too much stress, but not too little either. He suggests that relaxation can be a trigger for some. This is very similar to Richard Boles advice. I certainly try to stick to this as far as possible.

Di Disley

Adult co-ordinator 2010


Doctor – I am still vomiting and I feel nobody understands

Lena Togher, Sandra Warren and Dr. David Thompson

 

This article appeared in our Autumn 2004 newsletter and was designed to cover some of the basic questions about Cyclic Vomiting Syndrome for the non-specialist reader. It has been set up in the form of a dialogue between a hypothetical patient and an equally hypothetical doctor, to enable some of the very personal issues around the problem to be discussed in a way that should be recognised by and be of help to sufferers and carers.

It should be noted that not all the issues raised in the article will be of equal relevance to all sufferers, nor is it possible to include the specific issues of all sufferers in this necessarily brief article.

The Sufferer

Emma is in her late twenties, she has been working successfully and happily as a manager in a large company and has started a family with one small daughter. At the beginning of the year she woke at night from sleep, feeling very nauseated and began vomiting profusely. She saw her general practitioner after one day of vomiting and was given a course of anti-emetics following which the vomiting slowly resolved over the course of 3-4 days. One month later a similar event occurred whilst she was away from home which led to an emergency admission to a hospital away from home. During seven days in the hospital she received fluids by vein and large doses of anti-sickness medications and a number of investigations were performed to exclude serious causes of vomiting. She was discharged after a week on anti-emetic therapy but no explanation for the vomiting was identified. She has now had several further attacks in the months following the hospital admission, and has found herself in a consultation with her doctor, Dr. Medic. She is naturally very concerned, and feels totally alone with her problem so she raises the following questions.

 

The Consultation

Emma: Doctor, I have now had several episodes of uncontrollable vomiting and I am very concerned because no-one has really been able to tell me what it is that is the matter. So what is it that I have got, and is it very serious?

Dr. Medic: I am confident that you have a condition called Cyclic Vomiting Syndrome (CVS). This term is used to describe bouts of severe nausea and vomiting that can last for up to several days and which alternate with periods of relative freedom of symptoms. The fact that your period in hospital failed to identify any cause for the vomiting is good news since the doctors have effectively excluded all of the potentially life-threatening problems that present with vomiting. This is why I am now much more confident than earlier in the year about using the term CVS to describe what is happening to you.

Emma: So why have I got it?

Dr. Medic: Unfortunately nobody can provide a satisfactory answer to this question. Indeed if I or the other doctors had been able to find the cause, then the term CVS would no longer apply! That fact that we call it a syndrome indicates that we really do not understand the exact cause of the problem even though we are very well aware of the severity of your symptoms and the suffering that it causes.

Emma: So do you mean to say that nobody knows what causes it?

Dr. Medic: In a way that is the truth I am afraid. There are many doctors with many ideas as to what might be the explanation but so far, for an individual patient, it is impossible to explain why it happens, and why it started when it did. I hope that by encouraging as many doctors as possible to know about the condition, and to think about it and research it, we will eventually identify all the causes of vomiting. However, we must be patient since these advances tend to come after a lot of very painstaking enquiry, and research cannot be rushed, I am afraid.

Emma: Is it fatal?

Dr. Medic: The good news is that people, like yourself who become sufferers as adults, are able to live a normal lifespan and for the most part, stay reasonably well. So you should not worry about it having effects on your body which could harm you permanently.

Emma: So, how can it be treated and cured?

Dr. Medic: At present I am afraid there is still no known cure for most people. However, there are an increasing number of ways in which people’s symptoms can be managed, and their lifestyle improved despite the problem. In addition, it is important to remember that there is no reason to believe that the frequency of attacks will get any greater than at the moment. Indeed most people tend to report that the number of attacks declines with the passage of time.

Emma: So what treatments can I take?

Dr. Medic: There are a number of tablets that we will try together to see how they help you. However, it is difficult to predict which ones will suit you, so we will have to try them for a while and see their effect on the frequency and severity of your symptoms, and whether or not any side-effects are tolerable. Different people tend to respond somewhat differently to medications which is why we cannot as doctors predict what is likely to suit you best. We will therefore probably try you on a series of different medications that you will take, some to see if we can reduce the frequency of attacks, others to see if we can reduce the severity of an attack once it begins.

Emma: Sometimes I am aware that the attack is about to start. Should I try and take a tablet to prevent the symptoms once I am sure that it is beginning?

Dr. Medic: Yes, in general if you are able to predict that the problem is beginning, then it makes sense to take medication at that point rather than when vomiting has started.

Emma: Why didn’t the doctors and nurses seem to understand what it is that I am suffering from when I went to the hospital?

Dr. Medic: Whilst the problem is very clear to you and whilst all doctors and nurses will understand that you are suffering, many will not be aware of the condition because it is really quite uncommon. As a cause vomiting your condition is perhaps bottom of a list of at least a dozen other problems, and therefore doctors and nurses in hospitals will feel the need to exclude all the other possible diagnoses first. It is also important to remember that there is no clear diagnostic test for CVS, i.e. there is no blood test, X-ray or scan that can be done that proves that you have this condition rather than any other. In general, diagnoses made by exclusion are much more difficult to establish than those for which a diagnostic test is available.

Emma: So, am I alone with this?

Dr. Medic: Whilst you may be the only person that we know of locally, you are certainly not alone either in this country or elsewhere in the world. There is an increasing recognition of the condition in adults and there are now a number of websites and patient help groups that can help you to get in touch with similar sufferers. Many people find that the opportunity to share their experiences, however bad, is a very useful way of gaining help about the problem for themselves.

Emma: So are you saying that this is not all in my head, because some people have suggested that I am only suffering because I have excess stress in my life?

Dr. Medic: I think that most doctors who see patients with your condition will agree that it is certainly not all in the mind and that referral to psychiatrists for treatment is certainly not likely to be helpful in the first instance.

Emma: One person has suggested that I take antidepressants but I am really not depressed. What do you feel about that?

Dr. Medic: Antidepressant therapy is of course an excellent treatment for people who are depressed and anyone who is faced with a serious disability like yours is likely to find themselves with a feeling of increased despair which can lead to depression. Whatever the cause, the existence of depression is likely to make any physical condition worse and needs appropriate attention. This is something we should perhaps talk about later.

Emma: I have been doing some research of my own on the internet and reading one or two magazines, and somewhere I have read that the condition is a children’s disorder. But I never had any problems until just recently, how can this be?

Dr. Medic: Whilst the term CVS was coined primarily for the occurrence of unexplained cyclical vomiting in children, and indeed most individuals described until now have been children and young adults, it is now clear that it does occur for the first time in adults so that it should no longer be presumed that adults cannot have CVS. However we cannot presume that the cause of the problem in children will be the same as in adults.

Emma: The information also said that it was associated with migraine, but I have never had a headache in my life, how can that be?

Dr. Medic: It is important to realise that whilst many people who suffer from classical unilateral headaches (migraine) have accompanying nausea and vomiting, and that some people with migraine can have episodes of vomiting with only very mild headaches, this is does not mean that all people with unexplained vomiting have migraine. For those people who do sometimes have headaches and vomiting, it is probably worth trying some standard anti-migraine treatment to see if this will help.

Emma: Do I need any more tests other than those that were done during my hospital admission? Are there any other possibilities that may not have been thought of?

Dr. Medic: The hospital tests that will have been arranged will almost certainly have been conducted to make sure, that there are no structural abnormalities of your stomach or intestines, that there are no serious metabolic conditions, and will probably also to make sure that there are no serious problems in the brain. Whether or not it is worth proceeding to more esoteric tests really depends upon whether there are further clues in your symptoms that might suggest that the vomiting, when it occurs, is a manifestation of another disorder. This is something we can explore together.

Emma: What sort of symptoms might these be?

Dr. Medic: Some people have premonitions of the vomiting such as thirst, and this warns them that an attack is coming on. If you become aware of any peculiar symptoms which precede an attack, it is important to note them and report them to me.

Emma: So should I keep a diary of these things?

Dr. Medic: I think it would be very helpful if you could keep a simple diary noting the time and date of onset of symptoms and their duration, together with any other symptoms that might have been present at the time. It will be helpful to have this information before we try out different therapies, since if a problem is intermittent, it would be necessary to take therapies for quite a long time before we can be sure that they had prevented a recurrence.

Emma: What about food? Does what I eat trigger an attack? I used to be certain that it was due to a number of things I ate but I just can’t be sure anymore.

Dr. Medic: In some people it appears that eating fatty food can be a trigger. However, for most, there appears to be no specific food which is responsible. Whilst it will be helpful for you to keep a watchful eye on the association between food and an attack, you must remember that you will have always eaten something in the day or so prior to an attack and therefore it is important to avoid confusing coincidence with causation. It is really very difficult to find a food trigger unless there is a strong and close association between the two.

Emma: So what should I do if I get another attack? I am still worried.

Dr. Medic: If you are keeping a careful note in your diary of events, and if you are happy to do, I would recommend that you keep some anti-sickness medications at home so that you are ready to treat yourself as soon as the problem begins. It is always better to try and prevent a severe attack rather than wait for it to happen and then try to treat it.

Emma: Doctor, thank you very much for the chance to talk, I feel a little more confident already about the situation.

Dr. Medic: Don’t worry Emma, we will work on this together so that we will reduce the symptoms and get you back to a more normal life quite soon.


Doctor – Things have been a little better in the last year but can we talk some more? 

Lena Togher, Sandra Warren and Prof. David Thompson

 

This article is a one-year follow-up to the article that appeared in the CVSA Autumn 2004 newsletter. As in that year’s article, it has been set up as a dialogue between a hypothetical patient, Emma, and the equally hypothetical doctor, Dr Medic. Once again it must be recognised that the issues raised in the article, whilst being likely to be of relevance to many sufferers, will not necessarily be relevant to all.

The sufferer Emma, who visited Dr Medic last year, has now returned after approximately one year to share her views on how she has got on and to ask Dr Medic about some points which are still of concern to her.

The Consultation

Dr Medic: So Emma, it is nice to see you again, how have things been in the last year?

Emma: Thank you for seeing me again, I feel happier now that I have managed to keep going over the last year. When we first met I did not really know how I was going to cope with this problem but, as you said I would, I am still reasonably well, and I am coping with my problem and managing my life better now that I know a little more about what is happening to me.

Dr Medic: So how is it that you have coped?

Emma: Well, as you might have expected, I have tried most of the things that I have read about, including alternative and relaxation therapy, and I think I have learned that there is no quick-fix to this problem. In fact, I think I have now come to the conclusion that it is actually up to me to take control of my life again and to make sure that my life goes on despite the problem. It is probably this that has made the most difference, before I was totally dependent upon doctors and nurses, now, whilst I know that they can probably help me when I get a bad attack, the rest of the time I can cope and I feel that I am now in charge of the condition.

Dr Medic: So have you had any further attacks?

Emma: Yes and I have been back into hospital once in the last year, but they don’t seem to frighten me so much now.

Dr Medic: So how is that?

Emma:  Well, since we spoke I have now decided to take the medications that seem to work for me at the very first sign of the problem rather than waiting for the attack to really occur. Whilst I can’t be sure that this is the only thing that has changed in the last year, I am certain that on several occasions, the attack has been much briefer and less severe, and I have not ended up in hospital.

Dr Medic: So, how can you be sure that doing this has stopped a full attack occurring?

Emma: Well I suppose I can’t really, however my diary tells me that I have only been in hospital once in the last year rather than four or more times in previous years.

Dr Medic: So how are you coping with work and family?

Emma: Things are better than before, I think it is because I am now more confident in myself and because I have told everybody what the situation is rather than trying to hide it and keep it to myself. People now know that I have got a genuine problem and I feel comfortable about discussing it with them, so they understand.

Dr Medic: When we last spoke I raised the matter of migraine with you and asked whether you had any headaches associated with the vomiting. Have you had any in the last year?

Emma: No, none, but what is interesting is that my mother has reminded me that she gets migraine from time to time.

Dr Medic: That is interesting but I don’t think it tells us for sure that there is some relationship between your episodes of vomiting and migraine, however if you think it would be helpful in your particular case you could consider your problem as having some relationship with migraine.

Emma: I have been thinking the same myself, so should I take any treatment for migraine to try and stop an attack?

Dr Medic: Well, in theory you could try to take something to try to prevent an attack, however if you are only suffering from one or two episodes every six months or so, it will be very difficult to know whether or not taking a tablet every day for the prevention of migraine was actually working. You would probably have to take it for over a year before you had any idea about its effect on frequency of attacks.

Emma: Should I have any more tests now? I have had none over the last year.

Dr Medic: I am afraid there is still no diagnostic test to explain what causes cyclic vomiting, and in the absence of any new symptoms or any increase in the frequency of attacks, I would have thought that there is no indication that repeating all the tests again or doing more would really change how you are managing yourself.

Dr Medic: So, did you find that the internet was helpful? I know that you explored it last time we met.

Emma: The CVSA site was really helpful. Before I used it I thought it was only me who suffered from this problem and now I know that there are many others in the same position as me, and reading their own comments about themselves has been a very helpful source of information.

Dr Medic: So have you been to the CVSA meeting?

Emma: No, do you think I should?

Dr Medic: Well, I think if you can it would be helpful not just for you but for all the newly-diagnosed people who are likely to be in the same position you were a year or so ago and who would benefit from someone with the degree of common sense that you have who can reassure and encourage them. Even if you can’t go, why not join the Association? The advantage would be that this would help build up the registry of sufferers around the country and allow surveys to be conducted of people with similar problems in order to see whether there are common patterns to the attacks. This might give doctors and researchers some idea about what actually causes the problem.

Dr Medic: Have you continued to keep your diary of attacks?

Emma: Yes, but so far I don’t think I have found anything of great help to me. I do know however that there are a number of things that I thought were responsible for an attack that now don’t seem to be, for example I used to think it was a particular food, but now I have had that food on several occasions and had no problems, so this has allowed me to be much more relaxed about what I eat. Shall I continue with the diary?

Dr Medic: Yes I think so, because all information helps.

Emma: So what should I do next doctor?

Dr Medic: Well I think it would be helpful for us to keep in touch even if it is only for a brief period once a year. It is always useful to share ideas, I can tell you when anything new happens, and you can tell me if you get any new ideas about what might be causing the problem in you and how you are dealing with it.

Emma: One thing I wanted to talk to you about was what might happen if I go on holiday and I get a further attack. How will doctors who don’t know me understand the problem?

Dr Medic: This is always a bit of a difficulty if you get taken really ill and end up having to be in hospital and the doctors don’t know you. First, it is of course important to recognise that if you have had a series of attacks over the years and they have always been identical in nature, that the next time you get a very similar set of symptoms it is likely to perform in the same way as before. However, once in a while something unusual happens which requires the doctors to keep an open mind. Therefore, whilst it is important that they do know about the condition from which you are suffering, they may very well wish to check you more carefully to make sure that nothing new has happened in addition. If you like I can provide for you a short note which you can keep with you when you go on holiday which can be shown to any doctors that you see and explain the situation to them.

Emma: Thank you very much, that would be most helpful. I will look forward to seeing you again next year to tell you how I have got on.


 

Our Experiences page contains links to many other adults telling their CVS story.