Doctor – I am still vomiting and I feel nobody understands
Lena Togher, Sandra Warren and Dr. David Thompson
This article appeared in the CVSA-UK 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.
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.
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