AROMATHERAPY AND HYPNOSIS IN THE MANAGEMENT OF EPILEPSY

by Dr T Betts

TIM BETTS*

LYN GREENHILL**

BIRMINGHAM UNIVERSITY SEIZURE CLINIC

QUEEN ELIZABETH PSYCHIATRIC HOSPITAL

BIRMINGHAM

B15 2QZ UK

*Reader in Neuropsychiatry, Clinical Director

**Nurse Practitioner in Epilepsy

“Hoc quaeque eiusdem generis sunt, extra medicinae professionens cadunt, quamvis quibusdam visa sint”

Scribonius Largus.  Compositiones 17. p. 11

“This and anything else like it, is outside the medical profession – although it seems to have helped in some cases”

He was referring to people with epilepsy being given part of the liver of a dead gladiator to eat.

INTRODUCTION

Epilepsy is not necessarily abnormal (since it is common in some animal species where, being connected with the flight or fight reaction, it has survival value) and is a biological phenomenon. If a person carries a lesion in his brain or has a genetic predisposition to epilepsy this does not necessarily mean that the epilepsy will occur.   There is good evidence that epilepsy, if it is lurking in the brain, is most likely to start during periods of stress or during significant life events.     Once the epileptic process has been triggered off it becomes self perpetuating, but is also still susceptible to stress and to being triggered by the state of mind of the person who has it. 

One of the factors that can inhibit seizure activity, or cause it to spread from the original focus, is the level of arousal in the part of the brain which surrounds the original discharge.  In lay terms if the part of the brain surrounding a discharging focus is in a very low state of arousal (e.g. the person is bored) or is highly aroused, (overactive), the seizure discharge is more likely to spread: there is an optimum level of arousal when seizure discharge is least likely to spread for each individual with epilepsy (Fenwick 1991)

Epilepsy is a condition in which changes in transmitter and neuronal function disrupt the balance between the excitatory and inhibitory forces in the brain.  Despite this physical basis for epilepsy, in many ways it behaves like a psychosomatic illness (Betts 1992).  This can be so even when there is an obvious structural lesion in the brain to account for the epilepsy. 

Arousal can be modified and altered by life events, by stress and by efforts of will and concentration or by successfully learning to relax (Fenwick 1991).  Arousal responses can also be conditioned.  Since arousal is involved in the initiation of epileptic activity, and in its propagation, psychological factors are very much involved in minimising seizure spread or modifying the epileptic process and form the basis of self control techniques. 

Self control techniques for epilepsy have existed since Graeco-Roman times. Despite the recent success of medication in controlling epilepsy there is a developing interest in these techniques as we realise the limitations of medication (Fenwick 1991, Dahl 1992, Betts 1993), both in adults and in children.

Many different methods have been used, mostly involving recognising and avoiding triggers to seizures, or interposing a counter measure when a seizure is felt to be on-coming, or, in situations where seizures are likely, by learning specific physical or psychological mechanisms to abort a seizure.  The advantage of such methods is that the person with the epilepsy learns to control it himself or herself  (although will have to be taught how to do it and will have to develop self awareness so that he or she can recognise seizure triggers or warning signs that a seizure is coming or the prodromal symptoms which presage seizure activity).  These techniques, in themselves, particularly if successful, increase morale as it gives the person using them the feeling that they are getting some control back over their epilepsy:  this may be the most therapeutic factor of all.

In many of the published studies on self control it is difficult to determine exactly what method the person was using or what was actually working for the individual:  general treatment effects may be involved (just becoming relaxed, losing the fear of seizures, cognitive changes, or a placebo effect).   For the individual patient, it does not really matter how the technique works if it does work.  It is a difficult area to research because it is not easy (although not impossible) to provide placebo controlled conditions within the treatment package to try to tease out what factor is really operating.  Many case reports of successful behavioural treatment are of patients with unusual seizures.  When reviewing the literature the reader has to be certain that the person being treating did actually have epilepsy, since non epileptic seizures are usually of a psychological nature and would be expected to respond to psychological therapy.  It is possible however, even in a single patient to carry out a controlled study (Dahl 1992).   

THE SENSE OF SMELL

Smell is the most primitive of all our five senses.  Unlike sight, hearing and touch,  there is no area in the more complex part of the brain where smell is appreciated and analysed:  in the human, smell reception and interpretation is confined to the more primitive part of the brain (Van  Toller 1992).  This is why we can only describe smell in a limited way (e.g. as pleasant or unpleasant, familiar or unfamiliar, like or unlike).  We cannot describe its texture, or its shape, or its colour or its rhythm, or interpret a smell as we can with sight or sound.  The interpretation and reception of smell however, occurs in those parts of the primitive brain, the limbic system, which are often the site of epileptic activity (Carroll, Richardson, and Thompson 1993).

In the animal kingdom smell is extremely important since for many animals it is used to assess the environment, pick up danger signals and choose a mate.

Although in men and women the sense of smell is not as important as in animals it remains extremely easily conditioned, as in animals, (often after only one trial).   Such a conditioned “odour memory” is particularly resistant to deconditioning and once formed is difficult to eradicate (Kirk - Smith, Van Toller and Dodd 1983).  Such a conditioned response to odour is learnt best when associated with emotional experiences (Engen and Ross 1973, Hertz and Cupchick 1992).   Most of us know that certain odours, otherwise long since forgotten, if re-encountered, provoke specific memories and emotions, often of childhood.  Interestingly, clear sex differences emerge in studies of odour memory:  women have more emotional and clearer odour memories than men.  Women also tend to have more olfactory experiences than men (Hertz and Cupchick 1992).

Although hallucinations of smell are a common aura in human epilepsy, smell has been little used as a counter measure against an oncoming seizure.   In ancient medicine unpleasant odours (like burning hartshorn) were used by physicians to stop oncoming or actual seizures.  This practice certainly persisted into the Renaissance even into Shakespeare’s time (Betts and Betts 1998).  The reason for this practice was based on the idea that an unpleasant smell would drive the womb (which, in an epileptic seizure, was supposed to have wandered from its usual position into the throat) back to its normal  resting place:  sometimes sweet smelling substances were placed in the vagina to draw this errant organ back (quite how this technique was supposed to work in men was not made clear!).  Even today smelling salts are still occasionally used  to revive those who have swooned. 

It is just possible that this ancient practice may have worked because smell reception does inhabit the same bit of the brain where epilepsy so often starts.  Efron in 1957 showed that an odour could be used as a counter measure and could be easily conditioned so that it can be used automatically without having to impose cognition (thinking) between the stimulus and the response (because of the lack of higher brain input into the development of a smell memory).  He showed that within a comparatively short time of using a pleasant olfactory stimulus (Jasmine) to stop a seizure, smell memory takes over.  His patient no longer actually had to physically smell the Jasmine oil to be able to stop the seizure, but could just use the memory of the smell.  Despite interest in Efron’s paper,olfactory inhibition of epileptic activity has not, until now, further been exploited.      

AROMATHERAPY

In the way it is currently used, is comparatively new, although it is obviously rooted in much older practices, going back to medieval times, involving massage and herbal treatments.  For general reviews see Davies (1999) and Price and

Price (1999). 

In the United Kingdom the practice of aromatherapy is largely undertaken outwith the medical profession, although in France many practitioners are  medically qualified.  This is because in the United Kingdom the techniques used in aromatherapy are largely those of inhalation and massage, whereas in France aromatherapy oils are often used as external or internal medicines. 

Aromatherapists use diluted aromatic oils in whole body massage, derived by various means from various plant species (there may be marked differences in the characteristics of these oils, even from closely related species and even in the same species grown by different agricultural practices or in different settings).  Aromatherapists try to use “pure” oils so that their constituents remain as constant as possible and therefore have predictable properties.  These pure oils contain a mixture of various plant derived compounds, many of which have a pharmacological effect.  Aromatic substances have a direct effect on the  smell receptors at the end of  the olfactory nerve (the first cranial nerve) at the top of the nose : this nerve runs into the primitive part of the brain which receives smell . Aromatic substances are also fat soluble: so a massage with a diluted aromatic oil means that some of the active constituents of the oil will penetrate the skin easily and get into the blood stream without first having to go through the liver (which would break them down).   It is possible then that some of these active constituents in small amounts will go straight to the brain.  In conventional aromatherapy massage therefore the recipient is not only possibly receiving pharmacologically active compounds through the skin and going to various target organs including the brain, but is also able to smell the oil, as well, which may also be part of the therapeutic process, as is the massage itself.  The oils can also be used diluted in a bath, or the aroma diffused into the air, via a burner.

Most oils that aromatherapists use are relaxing or enhance feelings of well being: a few are arousing and alerting (or at least are said to be): some have other properties like a diuretic action or smooth muscle relaxation.  In the United Kingdom aromatherapy is mainly used for relieving tension, stress and anxiety and enhancing well being.  Most of the oils that aromatherapists use  are safe for people with epilepsy (although a few which contain a large amount of camphor, which is a convulsant agent, are not: you will find a list, at the end of this piece, of those oils which may be particularly useful and those oils that should be avoided).  One of the problems about recognising whether an oil is potentially toxic or not is that the published information about toxicity is often not directly about the oil but about the plant from which the oil is derived and therefore applies only to the compound being taken by mouth.  Massage with small amounts of the oil, or just inhaling the fumes of the oil from a burner, is probably much safer (although some oils are skin irritants and must be used carefully).  Trained aromatherapists are conversant with the properties of the oils they use.

USE IN EPILEPSY

Interest in the use of aromatherapy in people with epilepsy started in the Birmingham University Seizure Clinic some years ago, when one of our team members was training in aromatherapy.    As part of her training she asked to try the technique in some of our patients with chronic epilepsy.  The literature at that time was confused about whether aromatherapy would help people with epilepsy or not:  indeed some aromatherapy authorities warned against its use in epilepsy – but we suspect that has much more to do with the fear that the patient might have a seizure during the massage ! 

Ten patients with chronic intractable complex partial seizures, with or without secondary generalisation,  agreed to take part in the study and were treated with two aromatherapy full body massages lasting one hour during a one month period.  Most aromatherapists use a blend or mixure of different oils (diluted in a carrier oil) in the massage, but with what may have been serendipity, we decided to stick to a massage with only one oil, chosen by the recipient from a variety on offer.  A choice of the more commonly used oils was presented to the patient who chose the oil he or she was going to be massaged with.  This “monotherapy” use we have stuck to ever since. 

TABLE ONE

FIRST EXPERIMENT IN USING AROMATHERAPY

10 PATIENTS WITH PARTIAL ONSET EPILEPSY

MEAN SEIZURE FREQUENCY

*seizure increase

The results of this preliminary study are shown in table 1.  During the treatment period itself and for about 1 month afterwards there was a marked reduction in seizure frequency in 9 of the 10 patients, although after 6 months seizure frequency had returned to its previous base line in all but one of the patients.  In this patient seizures stopped all together and did not return until a couple of years later. (Epilepsy is a condition that waxes and wanes in frequency anyway, so this may have been no more than coincidence although the patient was impressed  enough to train in aromatherapy).  One of the patients had an increase in seizures during the treatment period.  This patient had chosen Rosemary as his massage oil.  Rosemary is a very pleasant oil but it does contain camphor.

In this group of patients there appeared to have been a definite but transient seizure reduction, related to the aromatherapy treatments, but it was unclear what this improvement was related to.  Was it a pharmacological effect of the oils (but several different ones had been used).  Most likely it was due to a transient decrease in arousal or tension  induced by the treatment: reduction in stress is known to reduce seizure frequency (Betts 1992).  It could have been a placebo or general treatment effect (patients don’t normally expect to come to hospital and have an hour’s pleasant massage from somebody who also talks and listens to them).  Traditional aromatherapists would have suggested that the aroma might have caused the seizure reduction, and that the patients would “know” which oil would help them best.

Although the results of the this preliminary study were promising there seemed to be drawbacks to using aromatherapy in a clinical setting.  It is difficult to provide somewhere quiet and uninterrupted for an hour, so that a massage can be given.  Massage is labour intensive:  some oils are expensive and employing an aromatherapist is also expensive. Could we simplify the technique so that more patients could use it ?  Could we encourage the initial beneficial effect to continue for longer ?  Having read Efron’s (1957) paper we wondered whether the aroma of the oil could be used as a counter measure against an oncoming seizure, so that this could be made into a conditioned response.

It is difficult to get funds to research alternative therapies properly, and our further work on aromatherapy and its use in epilepsy has largely been to try to audit the effects of aromatherapy, used in various ways, in our patient population.  The patients who have received aromatherapy in our clinic are selected from the general patient population.  We have not carried out a randomised double blind control trial, or random allocation of treatment but have suggested the technique to those patients whom we felt on empirical grounds might be suitable (which has tended to be those patients who have a well defined prodromes or a warning of an oncoming seizure or a well defined and prolonged aura, or whose epilepsy is clearly related to stress and tension). 

We have also, of course, tried the technique out on those patients who requested it, having heard about it.  We have also advised some patients against it on the empirical grounds that it might do more harm than good.  Although we have not been able to do a proper scientific study (something we think is necessary and we will, at the end of this chapter be suggesting ways that this might be done) because we have never had the funds to do it.  All we have been able to do, then, is audit our empirical experience to try to draw lessons from it. 

We present here the results from 100 patients, followed up for at least a year after their initial treatment to try to draw some of these lessons.  These patients were treated in a variety of ways using aromatherapy.  These different methods were developed partly to meet the particular needs of an individual patient and partly to try to answer our own questions about the best way of using aromatherapy and to try to measure whether it worked and, if it did, how it had worked.

Initially patients whom we thought might be suitable were asked to keep a diary for 2  - 3 months recording not only  their seizures, but also triggers, seizure related life events and seizure related feelings and emotions (both pre and post seizure).  With any patient it is important to record something about the events that surround seizures.

With many patients, if they did this for a suitable length of time, it was often possible to identify reliable triggers or prodromes for their seizures, so that the patient was able able to reliably recognise an oncoming seizure (or a situation in which it was likely to occur) in sufficient time to impose a counter measure to block it.  This is the kind of approach that any therapist, who is trying to teach a patient a behavioural method of managing a seizure, will use.

One of our colleagues, Rosalind MacCullum, whilst a medical student with us, did an interesting project which showed that the instinctive reaction of most people with epilepsy to an oncoming seizure is to increase arousal (by concentrating hard on something else, for instance).  This may not be the most effective strategy as it is difficult to keep arousal up: we now teach patients to decrease arousal.  Sometimes this means going against their own instinctive reaction, but unless people are taught how to they usually cannot relax quickly.  (If you say “relax” to the average person they will immediately tense up!)  Experience has taught us that we should be teaching people to relax rather than increase arousal before an oncoming seizure.

Patients are then offered a range of relaxing aromatic oils to smell and are invited to choose an oil that they particularly like and personally respond to:  not all patients like the same oil.  Memory associations come into this ( if you associate lavender with your favourite granny who was always nice to you and gave you sweets you’ll have a positive response to its smell, but if, instead, you associate the smell of lavender with your other granny who always smacked you and was never nice to you you will have a negative response to it).  People with epilepsy probably do not have the same kind of smell experiences as people who do not have epilepsy: smell appreciation and sensitivity possibly waxes and wanes with the nearness of a seizure.  As we gained more experience we were able to offer an expanding range of oils: some of the oils which many of our patients find most useful, like Jasmine, are extremely expensive. We weren’t initially able to offer Jasmine, but now can.

For a variety of reasons, partly connected with the availability of staff and premises, patients were then treated in a variety of ways.  Some patients ended up mainly having a series of massages with their chosen oil, but sometimes it not possible to do this is either due to the lack of somebody trained to carry out the massage or lack of available premises or from the patient’s own choice (in the United Kingdom massage for many people has a somewhat negative connotation attached to it, related to dubious goings on in “massage parlours”).  Some people do not see it as a useful medical technique, or are too body conscious to contemplate its personal use. This may seem a pity, but it is no use using a treatment on somebody who is not comfortable with it.

Because we were thinking from early on about using the smell of the oil as a counter measure, some of our patients were treated not with massage with the oil but with an autohypnotic conditioning technique to help them to associate the smell of the oil with swift relaxation.  Some received both  this conditioning process and massages as well.

HYPNOSIS

Hypnosis is not having a good press at the moment and many people with epilepsy are warned against using it.  One of the problems for hypnosis is that it has become associated with stage shows by many people, rather than being seen as something that can be used therapeutically. Say to the average person “I am going hypnotise you”  and he or she will step back in alarm because of the fear of being taken over or losing control (a fear well known to anybody with epilepsy, anyway).  There have been one or two isolated case reports about people with epilepsy who have had seizures precipitated by an hypnotic technique and one case in the U.K. where hypnosis may have precipitated Sudden Death in Epilepsy. 

However we consider hypnosis to be safe in people with epilepsy providing that a trained hypnotist is doing the hypnotic induction. The hypnotist must not remind the patient, whilst under the influence of hypnosis, of situations that might induce a seizure or induce a state of mind which the patient knows is associated with his or her seizures.  The “waking up” procedure should be carried out slowly so that the patient doesn’t have a very sudden change in arousal.  It is sometimes said that people with epilepsy cannot be hypnotised but this is untrue, and in our experience are no more difficult, nor more easy, to hypnotise than anybody else. 

Hypnosis is not fully understood but appears, so far as we can judge, to be a high arousal state (in that it takes an effort of intense concentration to develop the hypnotic state and some studies have suggested a degree of high arousal in the electroencephalographs of people being hypnotised).  When patients have been taught to concentrate, either on a bodily sensation, a body part or some external object, they pass into a state of dissociation and suggestibility (although they are completely aware of what is happening to them and retain control).  If the state of dissociation and suggestability is deep enough (it varies from person to person and from time to time) then patients may be able to accept suggestions about their future behaviour and later automatically act on them (post hypnotic suggestion).  In people with epilepsy, who are often taking a lot of neurotoxic medication, the normal method of hypnotic induction (eye fixation) is often difficult because the patient’s eyes wobble too much under the influence of their medication.  Normally for people with epilepsy we use the hand elevation method. The patient has to concentrate on one hand (we choose the hand opposite to the side where the epileptic lesion is, if he or she has partial epilepsy) and by concentrating on it he or she can lighten it and it will eventually rise from a resting position.  This almost invariably works and begins to teach patients that there are forces in their brain which they may be able to mobilise.

After initial instruction, the patient practices at home and develops the technique without much more therapist intervention.   When this has been achieved and the patient can achieve the hypnotic state quickly and feels relaxed in it, a post hypnotic suggestion is given by getting the patient to smell his or her chosen oil and suggesting an association between the state of relaxation they are in and the smell of the oil.  When it appears that this association has firmly developed the patients carries a small bottle of the oil (or a handkerchief impregnated with it) around with them and practice inhaling the oil gently to induce relaxation.  When this seems to be working for them (observation of the patient during the inhalation will usually show a characteristic sudden loss of facial tension), then patients begin to use the technique when they are in a situation where a seizure is likely, or if they feel that a seizure is coming on, or in a situation where they don’t want to have a seizure.

Patients who do well with this technique eventually use the memory of the aroma they are using, rather than carrying the bottle with them and do seem to create a specific smell memory which has a behavioural effect.  One or two patients, who have been seizure free for some time using this method, tell us that after a couple of years they often no longer practice the technique (although we feel that constant practice is necessary) but occasionally they are suddenly aware of the aroma of their particular oil and opine that at that time perhaps epileptic activity has appeared in their brain and the brain has then automatically switched it off.  We would emphasise that this has only occurred with a few people.

TABLE 2

FIRST HUNDRED PATIENTS FOLLOWED FOR A YEAR AFTER TREATMENT

*  many of this group spontaneously learnt to use the aroma as a countermeasure.

Results

So, as a result of our trying to learn more about how to use aromatherapy in people with epilepsy, we had group of 100 patients, who we followed up for at least a year who had either just a series of massages with their chosen oil, or had had a series of massages plus the autohypnotic technique or had had the autohypnotic technique without any of the massages.  We would emphasise this was not a formal trial: patients were not randomly allocated to these three groups but to some extent got allocated for the other reasons mentioned above (including some people who chose not to be hypnotised because of their fear of it and some patients who wished to avoid massage).  A longer follow-up study will be published shortly: this does suggest that unless the technique is  continued to be practised it loses its efficacy over a period of time, as one might expect.

The results shown in Table 2 initially seem fairly impressive for a group of patients with chronic epilepsy who had not responded to conventional medication. However these were patients who had volunteered to be included, or whom we felt would benefit from the treatment. We are probably therefore seeing the optimum results that anyone could achieve with this method.  Almost certainly we would not get the same result in a group of randomly chosen patients, particularly as treatment has been matched to the individual patient’s wishes in a way that does not happen in a randomised controlled trial:  a point we will return to at the end of this chapter.

One thing that does appear to be obvious from these results is that  although there was no difference in result between the group that just had massage and the group that had massage plus hypnotherapy there  is less improvement in the group that only had the hypnotherapy.  There may of course be several reasons for this, particularly as the groups that accepted massage may not have the same psychological make-up as the group that chose not to be massaged.  The reason why there is no apparent difference between the massage only group and the group that had massage and hypnosis may well be that some of the “massage only” group developed, untaught and unbidden, their own association between the smell and the ability to relax quickly.   Spontaneously and without the use of hypnosis they began to use the aroma as a counter measure to stop an oncoming seizure, although not all patients in the massage only group did this. 

Not everybody undergoing this treatment finds it successful.  In some, as table 2 shows, there is a transient effect which disappears quite quickly (possibly just a placebo effect or a general treatment effect, or it may indicate reluctance to practice).  Some patients don’t respond at all.  As with any treatment a very few of the patients seemed to have an increase in seizures following a course of massage or hypnosis.  In two patients it was due to inadvertently getting the patient to associate the smell of the oil with having a seizure, rather than not having one.  Luckily, neither of these patients were inhaling an oil whose aroma they might encounter elsewhere, so this conditioned response disappeared quickly.  But these two patients illustrate the importance of not entering into any treatment like this lightly without due consideration and undertaking it with a therapist who can carefully monitor the effects of the treatment.  Interestingly, over the years that we have being doing this treatment, apart from one patient having a simple partial seizure whilst on the massage couch, no patient has had a seizure during massage (we have an instant first aid procedure worked out in case this eventuality should occur, but it has never had to be used).

Although the results presented in table 2 must be interpreted with caution, they seem impressive: but this was not a randomised trial (partly because we are still feeling our way as to how best to use this technique and who best to use it on).  Results would not be as impressive in a group of randomly chosen patients and where there was not a sustained therapist enthusiasm and input.  It is important to emphasise the technique does not work in everybody and, in particular, the technique has to be practised regularly and requires a major input and contribution from the patient (that is also its strength). Some therapists seem to get much better results than others.

If it does work (assuming not just by a placebo or general treatment effect) and that patient and therapist are not sharing a common delusion about efficacy what are the likely effective mechanisms?  We suspect that they are mixed.  Undoubtedly, in many patients all we are providing is a powerful olfactory countermeasure which, because it is olfactory, can be conditioned so that eventually it becomes automatic: massage with the chosen oil seems to be an important element in creating this conditioning.

But is there also a pharmacological effect?  Is there, in some of these oils, a naturally occurring anticonvulsant compound ?  In a patient where we could monitor the treatment by EEG there was suggestion that this might be so.  We also have the “clinical impression” with one or two other patients who use Jasmine that this is a possibility, although any pharmacologically based anticonvulsant effect would be working in a different way from a conventional anticonvulsant. 

However, in a very recently completed study (to be reported elsewhere) Eleanor Brown, a medical student working in our department, has carried our what we think is the first double blind controlled trial of aromatherapy.  In a group of normal subjects she measured the effect on mood, tension and arousal of a relaxing oil (Jasmine), an alerting oil (Lemongrass) and a carrier oil. There was no significant difference between the two oils or the carrier oil –all produced an equivalent reduction in tension.  In this experiment the subjects and the therapist were prevented from smelling the oil being massaged.  What was recorded was the effect of a good massage: there was no “pharmacological” effect.

So perhaps the effect lies in the aroma (as both aromatherapists and some scientists believe – Hirsch 2001).  Possibly, whatever effect massage has on the neurophysiology and neurochemistry of the subject is modified by the actual aroma of the oil, rather than by a direct pharmacological effect through skin absorption.  Perhaps this is just a placebo effect but if it is, it’s a pleasant placebo!

Determining the mechanism of a therapeutic effect is difficult without a large number of subjects and very rigorous experimental conditions.  It could be done (and indeed we will continue to try) but it also costs money to do a proper trial and it is very difficult to get funding for trials of alternative therapies.  What we may be able to do in the future is to standardise our technique  (knowing that some patients may require different techniques) then take a group of patients with epilepsy and randomly allocate them either to the aromatherapy treatment or to, say, cognitive behaviour therapy and have somebody who doesn’t know which therapy was used to analyse the results of both treatments.  That is possible and it should be done.

Who might benefit?

Bearing in mind that not all patients will respond to this treatment, who would we recommend to try it if they were having problems with conventional therapy. Firstly those people who can keep a diary and can  either recognise an aura which is long enough for them to employ a counter measure or who have recognisable prodromes or triggers to their seizures (one of the advantages of the smell memory technique is that it doesn’t need a great deal of cognition to use it, so even if the person is slightly confused during an aura they may still be able to interpose their aroma).  People using the technique must be prepared to practice and understand that the treatment isn’t a miracle cure or an instant panacea and need a therapist to help them.

Secondly we would suggest using it as a temporary measure in people going though a stressful  time in their lives and with a consequent increase in seizure frequency. This will help most people. Thirdly in people with epilepsy who have sleep related seizures who, surprisingly, since they don’t have prodromes, do surprisingly well with it: but aromatherapy promotes more restful sleep: fourthly in those patients who have an olfactory or taste aura where it is a particularly useful countermeasure. Some case histories are given in the appendix to illustrate these uses.

Are there dangers and precautions ?

We do see this is a complementary rather than an alternative therapy and wish our patients to continue to take their medication – but some of our patients have chosen to slowly withdraw from their drugs: if they do, it is important that they tell us.  People with epilepsy who wish to try both aromatherapy and hypnosis should:

v     Always consult a professional.

v     Always tell their medical adviser what they are doing.

v     Avoid camphor containing oils.

v     Never ingest the oils.

v     Avoid associating the aroma with having a seizure.

v     Use an oil they like – which doesn’t remind them of seizure situations.

v     Remember the technique takes time and patience – and may not work.

Acknowledgements

This paper describes the development of a technique over many years and has relied, for its development, on a group of helpful and enthusiastic students, professionals and patients – we thank in particular Rosalind McCullum, Cathy Fox, Victoria Jackson, Eleanor Brown, Lynn Howes and Caroline Burrow.

References

1. Betts, T.  Epilepsy and Stress.  British Medical Journal 1992; 305: 378-379.

2. Betts, T.  Neuropsychiatry.  In a Textbook of Epilepsy.  Edinburgh, Churchill Livingstone 1993;  pp 445-448.

3. Betts, T and Betts, H.  John Hall and his epileptic patients – epilepsy management in early 17th Century England.  Seizure 1998; 7: 411-414

4. Carroll,B., Richardson, J., Thompson, P., Olfactory information processing and temporal lobe epilepsy.  Brain and Cognition 1993; 22(2): 230-243.

5. Dahl, J., A behaviour medicine approach to assessment and treatment of epilepsy in children. Hogrefe and Huher, Seattle. 1992.

6. Davis, P., Aromatherapy an A – Z.  C.W. Daniel, Saffron Walden, UK 1999

7. Efron, R., The conditioned inhibition of uncinate fits.  Brain 1957; 80: 251-261.

8. Engen, T., and Ross B. Long term memory of odours.  Journal of Experimental Psychology 1973; 100: 221-227.

9. Fenwick, P., Evocation and inhibition of seizures.  In Advances in Neurology Vol 55.  Raven Press, New York 1991.  pp 163-183

10. Hertz, R and Cupchick, C.  An experimental characterisation of odour evoked memories in humans.  Chemical Senses 1992; 17(5): 519-528.

11. Hirsch, A., Aromatherapy: Art, science or myth?  Alternative and Complementary Treatment in Neurologic Illness.  Churchill Livingstone, New York. 2001. pp 128-150.

12. Kirk.- Smith, M.,  Van Toller, C. and Dodd, G., Unconscious odor conditioning in human subjects.  Biological Psychiatry  1983; 17: 221-231

13. Komarek, V. Olfactory activation in epilepsy.  In Epileptic Seizures and Syndromes. 1994.  J. Libbey, London pp 107-114.

14. Price, S., and Price, L., Aromatherapy for Health Professionals. Churchill Livingstone, Edinburgh 1999.

15. Van Tollers, S.  The brain and the sense of smell.  In Fragrance:  the Psychology and Biology of Perfume. Elsevier, London.  1992.

Appendix one – some case histories.

Jane (24)

During her birth she had a small haemorrhage into the part of the brain which controls the right side of her body.  This left a scar which later became a small cyst.  At the age of 14 she began to experience episodes of a warm feeling in her right hand.  A couple of years later, whilst doing important school exams the warm feeling was followed by uncontrollable jerking and twitching of initially her (right) thumb and then her hand.

Further attacks followed:  the jerking began to spread so that the whole of her arm was involved.  Occasionally the attacks were so severe that her leg would become involved and on one or two occasions the twitching seemed to spread to her left hand and arm as well.  During the attacks she remained conscious, very much aware of the fact that she was out of control, and she felt very frightened. 

Her attacks had been treated with various anticonvulsants which either gave her a headache, made her gain weight or made her feel drowsy, but they didn’t control the attacks. she had found that if she made her right hand into a tight fist as soon as she got the warm feeling, then the attack would not progress but, to keep it at bay, she would have to grip onto something or keep making a fist: it was tiring to keep this up and as soon as she let go, the seizure would resume and run its course. 

A diary of Janes’s attacks showed that they were more common when she was stressed partly because she feared the social consequences of the attacks and was embarrassed by them:  she was using a counter measure but not very successfully as it could not be sustained, so she volunteered to try the aromatherapy technique.

Jane chose her oil (Lavender) and had some massages with it: she found them very relaxing and noted in her diary that she never had a seizure within a few days of her massage.  She learnt the autohypnosis technique, and had a hypnosis session at the end of each massage.  Later she accepted a post hypnotic suggestion that when she smelt Lavender she would relax and  practised this for herself several times a week.  When it was clear that if she gently inhaled the aroma of Lavender she would quickly relax, she began to practice the technique, either when she was in the situation in which she had had a seizure before and might well expect another or in social situations.  When she felt the hot feeling develop in her hand she would immediately take out a handkerchief soaked with a few drops of Lavender and gently inhale the fragrance (gentle inhalation is important, as drawing cold air rapidly through the nose may actually increase seizure activity Komarek 1994).

She found that as soon as she inhaled the aroma of the Lavender the warm feeling would go and she felt, in her own words, “in control”.  After a while she found she didn’t have to use a handkerchief to inhale the aromatherapy oil because she merely had to think of the smell of Lavender and the seizure would stop:  in a situation were she previously felt she might have a seizure she now felt confident and in control.

That was 5 years ago.  Today she remains seizure free, no longer practices the technique, except very occasionally, and withdrew herself from medication before she had her first child.  She found that the relaxation technique that she had learnt (the autohypnosis) helpful during pregnancy particularly labour: and during her pregnancy she reverted to the practice of inhaling Lavender occasionally.

Mary (26)

At the age of 22 she began to have attacks in which she would feel increasingly detached from her surroundings as if she were in a plastic bubble, before suddenly losing consciousness and falling, to recover a few minutes later feeling somewhat confused, headachy and tired.  Investigation showed these attacks to be due to right sided temporal lobe epilepsy, although no cause for the epilepsy could be found.  She obtained some, but not complete, control of her seizures with medication (carbamazepine).  However, she found medication difficult to tolerate.  She was in a high powered job which required a great deal of concentration and the ability to think quickly.  She found this was impossible with the drug she was taking and doubted whether any other drug would be any better (she may, of course, have been wrong about this).  Because she didn’t have an obvious lesion in her temporal lobe she was unsuitable for surgery and therefore requested a trial of our aromatherapy training.  Because she lived some distance away from our centre, it was impossible to see her regularly and therefore it was decided to curtain the massage element of the technique and concentrate on hypnosis. 

She learnt autohypnotic induction through hand elevation:  after she could successfully practice this she was given a post hypnotic suggestion that the smell of a particular oil (she had chosen Ylang Ylang) would induce rapid relaxation.  In the meantime she had been keeping a diary, perusal of which (and discussion of her experiences) suggested that she would be unable to use immediate relaxation at the start of a seizure, because by the time she was aware that the seizure was starting she was already a little confused and might not be able to respond appropriately to the warning.  However, learning the technique in itself seemed to have reduced her seizure frequency.  Further discussion of her diary revealed that she could accurately predict when seizures were likely to occur because she would wake up that morning with a stressed anxious feeling: if she did she would inevitably have a seizure that afternoon.   We therefore concentrated on teaching her to relieve this prodromal feeling using the autohypnotic technique and the inhaled Ylang Ylang.  This required practice but, by using this technique assiduously, she was able to stop the prodromal feelings and her seizures. Later she slowly and carefully withdrew from her medication but continues to practice the technique regularly.  It is, of course, the patients’ decision whether to withdraw from medication or not. If they do decide to do this it is better the team looking after them knows about it and can suggest the best way of doing it. Slow reduction is best, with careful monitoring of seizure frequency.  The patient must know the risks of premature medication withdrawal.

So so far then we have met two patients who had either a sufficiently long aura or the ability to recognise a prodome and were able to use their aromatherapy technique as a counter measure, very successfully.  Jane, the first patient, eventually stopped using the aroma of the oil as a countermeasure employing instead merely the memory of its smell.  In time she even stopped using that but said it was almost as if her brain then took over because on several occasions she could  suddenly smell Lavender and felt “peaceful”.   She opined that this was because there had been a brief burst of epileptic activity in her brain which her brain had learnt to automatically switch off.  She may be right, although we were a little concerned at first that she might be describing a brief epileptic seizure itself.  

Mary on the other hand, continues, even though she remains seizure free, to practice her technique several times a week (she has a warm bath, lights an aromatherapy burner with some Ylang Ylang in it and practices her autohypnotic technique).  She feels this is important for her well being and anyway, helps to relieve the tensions of the day and it has become part of her life style.

But, would the technique work if a patient had no warning of oncoming seizures or if  seizures occurred in sleep.  Sometimes in this situation, although seizures may appear to be random events, careful diary keeping will show that they are not.

Glynis (30)

She has juvenile myoclonic epilepsy with the classic development in her early adolescence of early morning myoclonic jerks followed by tonic clonic seizures, which were also in the morning.  She was treated with Sodium Valproate and the jerks and seizures were controlled and she became a nurse.    Some years later, on the same dose of medication, she began to suffer from early morning jerks again,  if she worked a late shift followed by an early shift.  Later, unfortunately, her tonic clonic seizures returned and continued despite an increase in her medication.  Her nursing career was suspended.  Further increases in her dose of Sodium Valproate led to a marked increase in weight. She requested the chance to be included in our aromatherapy programme.

After diary keeping it was clear that her early morning jerks were related to not sleeping properly (after coming off a late shift she would not sleep well, ruminating as many health professionals do, about the events of the previous day’s work). If she then had to get up early in the morning to go back to an early shift, she would have her jerks.  Perusal of her diary also revealed that although she had no warning that a tonic clonic seizure was coming she could recognise that the seizures were related to a particular frame of mind and emotion -  anger:  occurring during a rather stormy relationship with her boyfriend. 

She chose Camomile as her oil, had some massages with it, learnt the autohypnotic technique and used the smell of the oil on a handkerchief whenever she was alone with her boyfriend and a row seemed imminent, or when she noticed that feelings of anger were developing.  Since learning the technique she did not have a daytime tonic clonic seizure.  Later, the relationship went the way of all relationships and she no longer needed to use the technique in the daytime. 

She was encouraged to put a drop of the oil on her pillow when she went to sleep after a late shift (she had been able to return to nursing).  If she did this she would fall asleep instantly, would awake feeling refreshed in the morning and no longer had jerks.   She was able to halve the amount of Sodium Vaproate she was taking subsequently without  a return of the jerks.  She continues to use the technique if she has had a hectic evening before going to bed.

We have had other patients with sleep related seizures who have used a similar technique: massage, followed by autohypnosis and then using the oil on their pillow to help induce better sleep, with significant or complete reduction in frequency of night-time seizures.  Since there is some evidence that seizures are more likely to occur during sleep if sleep is broken and disturbed  it may be that we are just seeing a beneficial effect of the aromatherapy oil on sleep itself.

Steven (38)

A few patients have achieved seizure freedom just by having regular massages with their chosen oil (usually Ylang Ylang or Jasmine).  Steven had difficult to control temporal lobe epilepsy with both simple partial and complex partial seizures.  When he was first seen they were occurring so frequently that he had had to temporarily give up work.  He was taking three different anticonvulsant drugs none of which completely controlled his seizures and one of which was certainly contributing to  the feelings of depression that he had.  He was unsuitable for surgery and didn’t wish to take any more medication so enrolled in the aromatherapy programme.  It had been intended that he would learn the autohypnotic technique (although diary keeping failed to show any obvious precipitant for his seizures).  He chose Ylang Ylang for his massage oil, and after his first massage became almost seizure free, just having occasional simple partial seizures which he was able to cope with.  After three massages two weeks apart he became totally seizure free and therefore felt that he did not need to learn the autohypnotic technique.  He has continued to have aromatherapy massage with Ylang Ylang, given by his partner, who we trained in the technique, about every 4 – 5 weeks for the last 2 years and has remained seizure free.  The problem with this is that he is still dependant on the massages to keep him seizure free, rather than developing his own control technique.  He has, however, been able to withdraw from the one drug that seemed to be making his depression worse and now feels a lot happier in himself.  We wondered about the mechanism of the apparent effectiveness of aromatherapy in his case, particularly whether there might be an actual pharmacological effect of the oil itself, although we felt it more likely that we just altered his mood and reduced tension and that what had affected his seizures. A course of aromatherapy during seizure exacerbations – which often lower morale and become self perpetuating as a result – may be the best use of aromatherapy of people with epilepsy.

There was another patient who gave us the chance of try to determine whether there was a pharmacological effect involved in effective treatment or not (aromatic substances pass through the skin quickly into the bloodstream and can affect a target organ within a few minutes).

Sylvia (22)

She was a student who had had her first and only tonic clonic seizure in her sleep following a period of stress and sleep deprivation.  She reported that for as lon