Botulinum toxin type A for the prevention of headaches in adults with chronic migraine

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Contents

3 Introduction What is Botox®?

How can it help? 4 What are the risks and side effects? 5 What if I choose not to have it? 6 What are the alternatives? How should I prepare? 7 Asking for consent 8 What happens during treatment?

What should I expect after treatment? 10 Notes 11 Contact us 12 Other useful contacts

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Introduction

This booklet has been written by the Headache Department at Guy’s & St Thomas’ Hospital. It provides information for patients about intramuscular botulinum toxin type A (Botox®) injections for migraine. It is not intended to replace discussion with your consultant.

If you have any questions or concerns, please do not hesitate to contact a member of our team who will be happy to assist.

What is Botox®?

Botox® (botulinum toxin type A) from clostridium botulinum is a prescription medicine that contains botulinum toxin. In large amounts this can be harmful, but in the very tiny amounts that nurses and doctors use, it can be beneficial. Botox® has been available worldwide for over 20 years and is used for the treatment of a number of medical conditions and also for cosmetic purposes.

How can it help?

Botox® is a licensed treatment for the prevention of headaches in adults with chronic migraine. Chronic migraine refers to headaches which occur on at least 15 days per month.

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Doctors worldwide have reported successful outcomes in the treatment of migraine in many different types of headaches. Before recommending Botox® treatment, your doctor will do a number of tests and full evaluation to ensure that it is suitable treatment for you. You may have already tried various medications without success. You may also be asked to fill in a headache diary before and after treatment to measure your response. It is important to monitor your care and we may be unable to continue treatment if you do not complete your diary. We will provide you with a diary before treatment either by mail or during your clinic appointment.

The effects of Botox® treatment will last around eight to 12 weeks and after this time your symptoms will return.

What are the risks and side effects?

All treatments have risks and side effects and we will talk to you about these in detail beforehand. Not everyone will experience side effects of Botox® treatment. Usually side effects occur in the first few days after treatment and will disappear within a few days. Muscle weakness in the area which has been injected is expected and may persist for several months or longer.

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Common side effects occur in less than one out of 10 people but more than one out of 100 people. Common side effects include:

Worsening headache or migraine or both

Rash, itching

Pain where the injection was given

Drooping of the eyelid

Muscle weakness

Neck pain, muscle pain, cramp

Muscle stiffness, tightness

Uncommon side effects occur in less than one out of 100 people and more than one out of 1,000. Uncommon side effects include:

Difficulty in swallowing

Skin pain

Jaw pain

Swollen eyelid

If you experience any of these side effects, you can contact the clinic, your GP or your local Emergency Department (A&E) if necessary.

If you notice any side effects not listed in this booklet please tell your nurse or doctor.

What if I choose not to have it? You are free to decline any treatment and if you decide this treatment is not for you we will discuss further treatment plans and alternatives that are right for you.

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What are the alternatives? Your doctor will discuss all alternative treatments including their benefits and risks with you. Other treatments include:

Trying new medication

Injections into the nerves of the head o Occipital nerve block (GON) injection o Supraorbital nerve block (SON) injection

Intravenous injections of medicines in hospital (Dihydroergotamine or DHE)

Surgical procedures to insert neuromodulation devices

o Occipital nerve stimulator (ONS)

Non-surgical neuromodulation devices o Transcranial Magnetic stimulation (TMS) o Transcutaneous supraorbital nerve

stimulation (TENS device)

How should I prepare? You should tell us about all medicines you are taking, especially any that thin your blood, such as antiplatelet medicines (for example aspirin or clopidogrel) or anticoagulant medicines (for example warfarin or rivaroxaban. Tell your nurse or doctor before starting Botox® treatment as they may advise you to stop taking these beforehand. Please do not stop taking any medicine unless advised to do so by the doctor or nurse.

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You should not receive treatment with Botox® if;

you have had a bad reaction to botulinum toxin type A in the past.

you have an infection in, or around any of the areas to be injected

you are pregnant or breast-feeding. If you decide to go ahead with the treatment, your nurse or doctor will check that it is the right treatment for you. BOTOX® treatment for migraine consists of a number of injections around the head and neck area. If you think this may be a problem for you please speak to your nurse or doctor. They will be able to give you some tips to help you relax during the treatment.

Asking for consent We want to involve you in decisions about your care and treatment. If you decide to go ahead, you will be asked to sign a consent form. This states that you agree to have the treatment and you understand what it involves. If you would like more information about our consent process, please speak to a member of staff caring for you.

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What happens during the treatment? You will have your treatment on the Day Care Unit in one of the clinic rooms. The doctor or nurse performing the injections will ask you to sit on a chair for the injections. The injections are given through a very small and fine needle. The number of injections varies (from 31 up to 39) and are given in specific points over the head and neck. The whole procedure usually takes between 10 to 15 minutes; sometimes it may take longer depending on your diagnosis and state of health. Most people describe Botox® treatment as uncomfortable but bearable.

What should I expect after treatment? It is very important that you follow your nurse or doctor’s care advice after you received Botox® treatment. You will have to wait for up to 30 minutes so we can observe the effects and ensure you have no unwanted effects to the treatment. You may get some bumps appearing where the injections where given, these tend to disappear within few hours. Try not to rub the injection site or wash your hair for 24 hours after your treatment as these may affect how effective your treatment is.

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Depending on how you respond, your nurse or doctor will advise you on the use of medication after your treatment. You will be expected to complete a feedback form and return it to the Neurology Department six weeks after your injection indicating your response to the treatment. It is important during this period that you keep a record of your headache times, score and medication use on you daily diary. The team are available Monday to Friday between 9am and 5pm if you have any questions but we are closed weekends and bank holidays. If your concerns are urgent or if you experience serious side effects please contact your GP or visit your local Emergency Department (A&E).

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Notes

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Contact details Headache Service Neurology Department 3rd Floor Lambeth Wing St Thomas’ Hospital London SE1 7EH Switchboard: 020 7188 7188 Extension: 50836 Fax: 020 7188 9489 Email: gst-tr.neurologyadmin@nhs.net Website: www.gstt.nhs.uk

For more information leaflets on conditions, procedures, treatments and services offered at our hospitals, please visit www.guysandstthomas.nhs.uk/leaflets

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Pharmacy Medicines Helpline If you have any questions or concerns about your medicines, please speak to the staff caring for you or call our helpline. t: 020 7188 8748 9am to 5pm, Monday to Friday Your comments and concerns For advice, support or to raise a concern, contact our Patient Advice and Liaison Service (PALS). To make a complaint, contact the complaints department. t: 020 7188 8801 (PALS) e: pals@gstt.nhs.uk t: 020 7188 3514 (complaints) e: complaints2@gstt.nhs.uk

Language and accessible support services If you need an interpreter or information about your care in a different language or format, please get in touch. t: 020 7188 8815 e: languagesupport@gstt.nhs.uk

NHS 111 Offers medical help and advice from fully trained advisers supported by experienced nurses and paramedics. Available over the phone 24 hours a day. t: 111 NHS Choices – Provides online information and guidance on all aspects of health and healthcare, to help you make choices about your health. w: www.nhs.uk

Leaflet number: 4527/VER1 Date published: December 2017

Review date: December 2020 © 2017 Guy’s and St Thomas’ NHS Foundation Trust

A list of sources is available on request