How can I find out which UK hospitals or clinics near me treat dystonia? Expand Head to our treatment centres page. Use the map of services on the website run by the British Neurotoxin Network.
How can I find out which UK hospitals or clinics near me provide botulinum toxin injections? Expand Head to our treatment centres page. Use the map of services on the website run by the British Neurotoxin Network.
The gap between my appointments for botulinum injections is getting longer - what can I do? Expand You should reach out to the team in charge of your care and explain your concerns. They may be able to bring your appointment forward. You can watch our webinar on coping without botulinum toxin injections or self-management tips. If possible, you could explore the idea of going to a private practitioner for a one-off treatment as they are often able to see patients more promptly. You should let your NHS provider know that you are doing this. It may not be a long-term option as treatment is expensive and often not covered by private healthcare plans. If you do not feel you are being listened to, or have a complaint, you can contact the PALS (Patient Advice and Liaison Service) at your hospital. If you are in England, and you do not feel you are being listened to, or have a complaint, you can also contact your local Healthwatch organisation.
What can I do about swallowing problems after my botulinum toxin injections? Expand It is recommended that you get in touch with your GP or the doctor who injected you. You can also: take small mouthfuls and chew carefully before trying to swallow keep a glass of water nearby to help wash down the food consider eating softer consistency food (thick soup, yoghurt, mashed vegetables) for a short while avoid crusts, large pieces of meat, and anything very hard eat in front of someone and not alone in case of choking if swallowing fluid is making you cough: make sure you are sitting up when drinking sip slowly through a straw suck ice/ice lollies Read more in Dr Marie-Helene Marion's article on swallowing difficulties. Swallowing difficulties can cause complications such as aspiration pneumonia or not being able to eat or drink enough. It is very rare but occasionally patients will need to be admitted to hospital to be fed through a tube for a few days.
Why did my first botulinum toxin injections not work? Expand When first starting botulinum treatment it can often take several rounds to get relief. Finding the best spots for injection and the right dosage can take time. To understand why your injections are not working, and if changes are needed, you must discuss this with your injector. It can be helpful to document the following information to help your discussion: percentage of improvement after the injection how long the benefit lasted after the injection side effects after the injection what has improved and what has not improved after the injection
Why have my botulinum toxin injections stopped working? Expand The effectiveness of the injections can vary for a number of reasons including how long you’ve been having them for, how large a dose you are given, how long it was since you last had injections and how severe your dystonia is. To understand why your injections are not working, and if changes are needed, you must discuss this with your injector. It can be helpful to document the following information to help your discussion: percentage of improvement after the injection how long the benefit lasted after the injection side effects after the injection what has improved and what has not improved after the injection In rare cases people can become immune to the toxin (only a few percent of all those being injected) so for most people, where the injections are not working there is another explanation.
Which medications are used to treat dystonia? Expand There are several different medications that can be used to manage the symptoms of dystonia. The main types and how they work are: Dopaminergic - increase dopamine Anticholinergic - block the effect of the chemical messenger 'acetylcholine' GABA Agonist - boost the levels of GABA (gamma aminobutyric acid), a chemical which stops the transmission of nerve signals in the brain acting as a muscle relaxant Symptomatic treating - suppress the release of chemical messengers such as dopamine and serotonin Anti-convulsant - relieve nerve pain
Are the medications I currently take for my dystonia the right ones for me? Expand Responses to different drugs can vary significantly from person to person. There is no 'one size fits all', so what works for one individual might produce unwelcome side effects in another. The team at Dystonia UK are not medically qualified to answer this question so you should discuss any medications with your GP or neurologist.
Could cannabis-based medication (CBD oil) help my dystonia? Expand At the moment, it is not possible for us to give any definitive guidance on the use of cannabis-based medication for dystonia. The main reason is that there has not yet been enough research into its effects for our medical advisors, and therefore us, to feel confident about taking a position on this type of medication. For more information: An information sheet prepared by Dystonia UK with more detail. NHS guidance on cannabis based products for medicinal use. Dystonia Medical Research Foundation's webinar on CBD and dystonia.
What type of physiotherapy is best for my dystonia? Expand The best type of physiotherapy will depend on the type and severity of your dystonia and the options available to you in your local area. Not all types of physio are suitable for all forms of dystonia and inappropriate exercises or stretching may make symptoms worse. It is important that the therapist is either trained as a neuro-physiotherapist or has experience of treating patients with dystonia. If you are considering physiotherapy, check first with your GP or neurologist.
Can you recommend a physiotherapist in my area who has experience with dystonia? Expand The NHS website has detailed information on how to access physiotherapy. You can also ask your GP or neurologist for recommendations of local services. If you are considering private treatment, you (or someone on your behalf) can find a practitioner near you by using the following search terms online: private physiotherapy for dystonia (+ your geographical area, e.g. Manchester) private neurophysiotherapist dystonia (+ your geographical area) private physiotherapist movement disorders (+ your geographical area) It is important to always check that the private practice has experience of treating dystonia patients. Dystonia UK is unable to provide lists of physiotherapists who specialise in dystonia as details change frequently and it is not possible to keep this information up to date.
I feel I’m struggling with my dystonia. Where can I get psychological support? Expand If you require emergency help do not delay reaching out. Call 999 or speak to someone 24/7 at Samaritans by calling 116 123. We recommend you start by talking to your GP about how you feel. You should ask to be referred to the appropriate support services. These could include counselling, cognitive behavioural therapy (CBT) or mindfulness guidance. You may have to wait for an appointment. If you feel you need to speak to someone in the meantime, you can contact: Mind Mind is a mental health charity in England and Wales. Founded in 1946 as the National Association for Mental Health. Mind offers information and advice to people with mental health problems and lobbies government and local authorities on their behalf. Samaritans Samaritans is a registered charity aimed at providing emotional support to anyone in emotional distress, struggling to cope, or at risk of suicide throughout Great Britain and Ireland, often through their telephone helpline.
Is selective denervation a possible treatment for dystonia? Expand Selective denervation (SD) is a surgical operation that involves cutting through the nerves that control the overactive muscles causing the symptoms of dystonia. It is mainly used for neck dystonia. However, it is performed very rarely in the UK.
What are 'sensory tricks'? Expand A sensory trick or 'geste antagoniste' is a gesture, such as touching a part of the face or body, which some patients find can temporarily help to relieve their dystonic symptoms.
What is DBS? Expand Deep brain stimulation (DBS) is a surgical procedure in which two thin, insulated electrodes are inserted into your brain. These electrodes are then connected by a wire under your skin to a battery usually implanted in the chest or in the abdomen. The battery operates similarly to a pacemaker, delivering targeted electrical pulses that block the signals causing the symptoms of dystonia.
Would deep brain stimulation (DBS) help my dystonia? Expand Deep brain stimulation (DBS) can be very successful at relieving dystonia symptoms, but its success is not guaranteed. It is not suitable for all types of dystonia and is usually only recommended when other treatment options have been ruled out. There are also many clinical criteria which need to be met before the procedure can even be offered. If you are considering DBS, we recommend talking to your primary care team to see if you may be a suitable candidate as it will depend on your circumstances and the team at Dystonia UK are not medically qualified to assess your suitability.
Am I a suitable candidate for deep brain stimulation (DBS) surgery? Expand If you are considering DBS, we recommend talking to your primary care team to see if you may be a suitable candidate as it will depend on your circumstances and the team at Dystonia UK are not medically qualified to assess your suitability.
I’ve heard about the PressOp™ device which can help those with blepharospasm. Where can I get one? Expand This is a device which attaches to spectacles to press on an area near the eye. Some people find this 'sensory trick' helps to relieve their symptoms. An order can be placed through the PressOp™ website or you can get in touch with us to pass your details to the Project Coordinator.
What can I do if I have concerns about any of my treatments? Expand First, discuss this with the clinician who takes the lead in your treatment - this might be your GP or your neurologist. You have the right to ask for a second opinion. If you do not feel you are being listened to, or have a complaint, you can contact the PALS (Patient Advice and Liaison Service) at your hospital. If you are in England, you can also contact your local Healthwatch organisation – they are an independent national champion for people who use health and social care services.
I live outside the UK – how can I get help with my dystonia in my own country? Expand It is best to start with your primary health practitioner (the equivalent of the UK's GP - General Practice - service). Discuss your symptoms with them and ask for a referral to a specialist movement disorder service in your locality. They should also be able to signpost you to other forms of support. You (or someone on your behalf) can search online to find specialists and other sources of support using the following search terms: Movement disorder specialist (+ your geographical area e.g. Kenya) Dystonia specialist (+ your geographical area) Neurological movement disorder clinic (+ your geographical area) Dystonia support (+ your geographical area) Dystonia UK cannot assist with medical fees or other costs. You could use the following online search terms to find possible charities or funders: Assistance with medical fees (+ your geographical area, e.g. India) Medical fees charity support (+ your geographical area) Help with healthcare costs (+ your geographical area)
Is there a cure for dystonia? Expand There is unfortunately currently no cure for dystonia. There are several different treatments that can reduce the symptoms of dystonia. Lots of people find that with the right combination of treatments they can live well with dystonia.