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UNDERSTANDING AND MANAGING FATIGUE FOLLOWING DIAGNOSIS AND TREATMENT OF ACOUSTIC NEUROMA (VESTIBULAR SCHWANNOMA)

What is fatigue?
“It’s like a wave that sweeps over you out of nowhere…you feel you need to shut down” SC

Everyone feels tired from time to time, perhaps after a busy day, physical exercise or a stressful event, but after a rest we are ready to get going again. The fitter we are, the better diet we have, the more sleep we get, the less stressed we are, the more energy we seem to have. This will be the same for most of us as fatigue is a natural signal to tell us to take a break from what we are doing and recharge ourselves.
Some people experience a more profound level of tiredness or lack of energy alongside certain neurological conditions and their treatment. This type of fatigue feels very different. It may feel out of proportion to what you have been doing, come over you unexpectedly and last for some time, even after resting. For people who receive radiotherapy, fatigue may occur some weeks after treatment and last for a few months.

‘In the joint skull-base clinic at Cambridge University Hospitals Foundation Trust, I regularly meet patients who describe that following radiotherapy (even a single treatment) they feel increased fatigued for some weeks even months. This varies greatly between patients and gradually settles over time. The post radiotherapy fatigue can often present itself as a loss of motivation and in general, light, gentle activity helps to reduce fatigue.’ Kate Burton (AHP Consultant Radiographer in Neuro-Oncology, Addenbrooke’s Hospital, Cambridge).

Other people may not understand your fatigue; indeed you may not understand it yourself because it’s not like anything you have felt before. People describe this kind of fatigue as overwhelming, unpleasant and sometimes feel it is outside of their control. It can impact what we think, how we feel and what we do.

Fatigue is considered to be multifactorial, frequently experienced as having physical, cognitive and affective components. For some people, fatigue improves over time, but this may take many weeks or even months. For others, they may never feel they can fully ‘recharge their battery’, but they can learn to manage it and make best use of the resources they have got.

Why does fatigue occur?

“My brain is working overtime trying to compensate”

Fatigue may be experienced as a primary consequence of a neurological condition, or secondary to other symptoms or consequences of the condition [1, 2, 3 & 4]. The underlying physiological mechanisms for specific conditions remain poorly understood. There is some evidence to suggest fatigue occurs when connections between the nerves between the brain and body have been disrupted and/or hormones and neurotransmitters have been depleted [1].

An acoustic neuroma is a benign tumour that grows in an area of the brain where there are many delicate connections between different parts of the brain and body, the brainstem. It grows on the nerve which helps to control hearing and balance and which is close to the facial nerve. Depending on its size, the neuroma may cause pressure on these nerves, and potentially the brainstem itself, and thereby disrupt certain functions and information travelling between various parts of the brain and body. If you have radiotherapy or surgical intervention, this may also disrupt connections depending on how tricky it is to remove your tumour.

Another reason fatigue may occur is because of the additional mental or physical effort people need to make to compensate for symptoms they experience [1, 2, 3 & 4]. This may be struggling to hear, particularly in noisy places, poor balance affecting walking, difficulty with vision or speech due to facial palsy or finding it harder to concentrate and think things through. It may be due to the emotional effort of coming to terms with the diagnosis and implications on your life and others. Fatigue is also a common side effect of radiotherapy.

It is likely that there may be several different factors that contribute towards a person being vulnerable to experiencing fatigue. Fatigue is a personal experience that feels different for everyone. It remains poorly understood by medical professionals, but there is a lot of research going on to try to find out why it occurs and therefore what might help. In our centre we have developed a clinical model [4], based on research evidence and clinical experience, as one way to make sense of the fatigue that many people experience after disruption to functions within the brain

The model enables therapists to consider
• What makes people vulnerable to fatigue, e.g. following diagnosis of or treatment for an acoustic neuroma, and what activities or situations may be potential triggers for them – so we can think about appropriate and personalised ways to manage it
• What signs/symptoms may indicate that a person is getting fatigued – so they can take action before it becomes completely overwhelming
• What are the mediating factors that might affect how a person responds – so we can enable people to make choices
• Unhelpful responses, which are understandable, but in the longer term won’t reduce a person’s vulnerability to fatigue
• Helpful responses to support fatigue management and reduce vulnerability to fatigue over time

What can I do about it?

“I don’t try to fight it, I give in and have a short nap then I am okay to go again”

One of the first things we need to do is understand what may make us vulnerable to getting fatigue and acknowledge this as a symptom that is a consequence of the acoustic neuroma; it’s not laziness! Other people need to understand this too, so they can support us to manage our energy levels. Some people describe 3 types of fatigue; mental, physical and emotional. Different activities and situations, even being around certain people, will drain our energy differently. Therefore we may need to develop a number of ways to manage these different types of fatigue.

Let’s use the analogy of a smartphone. We need to ensure our phone has enough charge in it to do the different tasks we may need to use in a day. This may be making calls or texts, using the satellite navigation function, surfing the internet, playing games or taking photos. Certain tasks/functions can drain the battery really quickly, so we may need to plan to recharge our battery during the day. We also need to keep an eye on the battery left throughout the day so we don’t suddenly run out.

People want to do different things in a day, which will require different amounts of energy depending on our individual energy levels and consequences of the neuroma. How do we ensure we have enough energy to do the activities we want and need to do? We need to check in with ourselves regularly and listen to our body. Do we have enough mental, physical or emotional energy for what we are about to do? Are we likely to need to top up our battery and if so, what could we do to recharge our battery throughout the day?

Potential symptoms that may be experienced with an acoustic neuroma and that may make us more vulnerable to fatigue include:
• Hearing loss
• Tinnitus and sensitivity to noise
• Dizziness/vertigo and loss of balance/co-ordination
• Facial numbness, tingling or pain
• Thinking skills require more effort
• Headaches

It is also important to take a holistic perspective, to recognise that an acoustic neuroma happens to a person, and individuals will cope differently with this diagnosis, symptoms, subsequent intervention and its impact on a person’s life. This emotional impact, both on yourself and others, may also contribute to fatigue experience.

What situations seem to trigger fatigue or drain the battery quickly?

Those activities that rely on abilities that have been disrupted as a consequence of the neuroma will make us particularly fatigued. So if we find it more difficult to hear due to tinnitus or hearing loss, being in noisy environments (such as supermarkets, social events) is likely to fatigue us very quickly.

Sometimes it is harder to work this out. Monitoring levels of fatigue at different times in the day or before and after certain activities can help us to discover our personal triggers. Knowing what our triggers are will help us to pace ourselves and plan when to take breaks to ‘recharge our battery’. In order to monitor fatigue levels, we need to be aware of our personal indicators. These may include:

• changes to our body (e.g. limbs feel heavier, hard to keep our eyes open, more clumsy, yawning)
• changes to our thinking skills (e.g. harder to concentrate, make more errors and more easily confused with inability to think straight and prioritise what you should do first!)
• changes to our ability to communicate (e.g. harder to find the words we want to say, speech may become slurred)
• changes to our mood (e.g. become more irritable, feel overwhelmed or stressed)

It may be helpful to create a simple ‘energy scale’: what does it feel like for you when you are full of energy, ‘half-full’ and completely drained? Although it’s a personal experience, others may notice signs of fatigue before you do, so ask people what they notice to help create the scale. This will help develop their understanding of the impact of your fatigue too.

Once you have developed your personal scale, you may find it easier to notice which activities seem to drain your energy levels quickly. You may notice that your energy levels drain more rapidly below halfway. This level is most likely to be the time to take action and recharge your battery, as often it is harder to take action when you are completely drained. So pay attention to what this feels like for you.

How do I manage my fatigue?

“I need to learn to live within my available resources”

Pacing
Pacing is commonly recommended for people experiencing fatigue and is much easier said than done! Few of us want to pace ourselves – we just want to get on with life. Pacing includes:
• having regular breaks and using relaxation techniques
• planning your time and being organised
• prioritising
• working within your available resources
• doing activities that may be energising

Once you have an idea of what situations/activities affect you, and what you can do to ‘recharge your personal battery’ it will be easier to plan and pace activities. It is likely that certain combinations of activities are likely to work better for you than others, and you may have more energy on some days compared to others, so it is important to keep checking in with how you are feeling and adapt your activity levels accordingly. Swapping between physical, mental/cognitive and emotionally draining activities can be helpful. Also, although most of us like and function a bit better with some routine, this in itself can result in boredom and fatigue – so move outside your comfort zone and experience something new; the results can be very rewarding and give those batteries a much needed boost.

Reducing effort
Energy conservation techniques and compensatory strategies are ways to do activities that make the most of your resources and get around some of the practical consequences of the neuroma. It slows down the drain on your ‘energy battery’. For example, if you experience memory slips more frequently, you may find it helpful to compensate by using a diary, smartphone calendar, alarms, or notebook. This reduces the likelihood of memory slips occurring, reduces effort in thinking, and also reduces frustration and worry caused when a slip occurs. So it can help with both mental and emotional fatigue.

It may be helpful to use a walking aid if balance is impaired, or supporting decision making through using flowcharts or checklists. Another way to reduce effort involved in doing tasks is to plan ahead and modify the environment around us. This includes reducing distractions in the environment such as noise, thinking about where we sit in a room to enable us to hear a conversation, having good lighting, and informing other people of what helps you to work at your best. An occupational therapist can help you to work out what compensatory strategies may work best for your needs.

Recharging the battery
This is personal because not everyone ‘recharges’ in the same way. It may include:
• Having a short nap (not after 4pm as this will disrupt the sleep-wake cycle)
• Relaxation exercises
• Mindfulness meditation techniques
• Listening to music
• Going for a walk/getting some fresh air
• Changing from a physical to a mental activity, or vice versa

People often need to experiment on what works best for them. We need to be realistic with what we can do depending on the demands we have. We may need to get better at delegating and prioritising activities.

Leading a healthy lifestyle
• Establishing a regular sleep-wake routine – going to bed and getting up at the same time can train our brain so it learns when to stay awake and when to go to sleep.
• Eating a healthy balanced diet – including slow release carbohydrates and regular meals
• Ensuring you are adequately hydrated throughout the day
• Take small amounts of regular exercise (seek medical advice if you are uncertain what you are able to do)

Seeking further support
Some fatigue can occur as a consequence of emotional responses to the diagnosis, the symptoms we experience and impact the acoustic neuroma has had on ourselves, our families and our life. If you feel your mood is low, you are feeling stressed or struggling with your thoughts, you are finding it hard to sleep, you are withdrawing from activities or feel irritable around others and it is hard to come to terms with what has happened to you, please discuss this with your GP. It may be that talking therapies such as counselling or Cognitive Behavioural Therapy, or medication may help.

Other medical conditions could be contributing to your fatigue so it is important to rule this out by speaking to your doctor. It may be that any medication you are taking has drowsiness as a side effect or there may be alternative ways of managing the symptoms you are experiencing. Please discuss this with your GP as there may be a better way of managing these symptoms.

SUMMARY

Fatigue following diagnosis and treatment of acoustic neuroma is more common than you think. It can improve over time and there are lots of things you can do to make best use of the resources you have. Key take home messages:
• Understand why you get fatigued and work out which situations are likely to tire you out more quickly
• Recognise your signs and symptoms of fatigue so you can take action early and avoid draining your battery completely
• Work out what to do ‘in the moment’ if you notice you are getting fatigued
• Plan ahead and pace yourself by thinking about your triggers to help manage your available resources
• Find out if other medical factors may be contributing to your fatigue by discussing this with your doctor

BANA forums are a good place to share experiences and ideas for managing fatigue.
Your GP may be able to refer you to an occupational therapist for specific advice on managing your fatigue.

This factsheet was written by Donna Malley, Occupational Therapy Clinical Specialist
The Oliver Zangwill Centre for Neuropsychological Rehabilitation
www.ozc.nhs.uk
January 2015
With grateful thanks to
• SC, SC and GN for sharing their experiences,
• MW and Katherine Burton, Consultant Radiographer in Neuro-Oncology, Addenbrookes Hospital, for editing this factsheet.

References:
1. DeLuca J (Ed) Fatigue as a Window to the Brain. 2005; London: The MIT Press.
2. Kluger BM, Krupp LB, Enoka RM Fatigue and fatigability in neurologic illnesses: Proposal for a unified taxonomy. Neurology 2013; 80(4):409-416
3. Ponsford J, Ziino C, Parcell DL, Shekleton JA, Roper M, Redman JR, Phipps-Nelson J and Rajaratnam SMW (2012) Fatigue & Sleep Disturbance Following Traumatic Brain Injury – Their Nature, Causes, and Potential Treatments. Journal of Head Trauma Rehabilitation. 27(3):224-233.
4. Cantor JB, Gordon W, and Gumber S (2013) What is post TBI fatigue? NeuroRehabilitation; 32(4):875-883
5. Malley, Wheatcroft & Gracey (2014) Fatigue after ABI: a model to guide clinical management. ACNR 14(2):17-19.

DISCLAIMER: This factsheet is for information purposes only and should not be a substitute for medical advice – you should always see your doctor and/or medical professional to support you to understand and manage your fatigue.

“The research was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care East of England. The views expressed are those of the author and not necessarily those of the NHS, the NIHR or the Department of Health.”

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