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In addition to getting the right treatment and support, our members tell the following actvities may be helpful.
Take exercise but remember it's worth checking with your consultant first as not all types of exercise are suitable for all types of dystonia. For instance, some types of weight training may not be appropriate - click here for more info.
Find ways to relax. Most people with dystonia find their symptoms easier to cope with if they are relaxed. You can find some self-help tips for managing stress here. Some people also find mindfulness and complementary therapies helpful in relaxation.
If you feel depressed or anxious ask for some help. These conditions are quite common among people with dystonia and make coping much harder. They can be treated - see more information here.
Seeking support from friends and family. Good communication can help with coping. A good question to ask is "Are you asking for as much help as you would give if someone asked you?"
Contact the Dystonia Society if you need support with something. List of our services here.
A geste antagoniste is a physical gesture or position (such as touching your chin) which may serve to temporarily interrupt dystonic symptoms.
People with dystonia have let us know that they have found the following sensory tricks / coping tips to be helpful. We are not able to recommend any of the following ideas but you may choose to give them a try. We have no clinical evidence that they will work universally, and therefore it is up to individuals to choose whether or not they may want to try them out.
Neck dystonia (Cervical dystonia or spasmodic torticollis)
- Touching the chin, back of the head, neck. cheek or upper face gently can help with neck dystonia (torticollis)
- The touch is usually (but not always) more effective on the side of the head with the dystonia.
- Reclining or sitting with head support.
- Resting the head against a wall.
- Using transportable back or neck supports.
- Using a body suit to assist posture.
- Looking at a fixed point or into a mirror.
Eye dystonia (Blepharospasm)
Some information below is from the US patient advocacy group, the Benign Essential Blepharospasm Research Foundation (BEBRF):
- Press fingers against the temples, end of the nose, or other parts of your face – need to find the spot that suits you.
- Use a tight baseball cap, hair band or sweat band around the forehead.
- Put your head back – close your eyes, or look down.
- Go in a dark place and try to relax.
- Gum chewing, whistling, humming, talking, sucking on a straw or singing sometimes keep the eyes open in order to do activities.
- Reading aloud.
- Looking down (some people find gardening or cooking helpful because they involve looking down).
Can’t cope with bright light?
- Block it out
- Baseball cap, golf visor, sunglasses (especially the ones with thick sides which also cut out the wind)
Voice dystonia (Laryngeal dystonia or spasmodic dysphonia)
The information below is from the US patient advocacy group, the National Spasmodic Dysphonia Association.
What can help:
- Vocal exercise (humming, speaking slowly, reciting nursery rhymes)
- Volume control (talking softly or loudly)
- Feeling relaxed
- Breathing deeper breaths, exhaling before speaking, not holding onto the breath
- Environmental control (talking one-on-one, not being interrupted)
- Using voice early in the morning
- Sensory gestures (covering eyes, pinching nose)
- Physical exercise (need to check exercise is appropriate with doctor before trying)
- Mental aspects ("not thinking about it", keeping a good attitude)
- Miscellaneous (physical rest, vocal rest, warm liquids, laughing)
What often makes voice quality worse:
- Stress (being tense, being in a hurry)
- Speaking on the telephone
- Speaking in a loud or large space
- Trying to talk over noise
- Lack of sleep
- Negative thinking
- Miscellaneous (overuse, weather changes, having a cold)
Mouth or jaw (Oromandibular) dystonia
- Some people find activities like speaking and chewing reduce symptoms (for others they can make it worse)
- For jaw spasms – a toothpick, chewing gum, or sucking a boiled sweet has helped some people
- If the mouth is dry, some people found that saliva replacement gel was helpful as it lubricates the mouth and helps prevent infection. This is available on prescription either via the doctor or dentist.
- Changing penhold / pen type
- Using exercises to relax before writing
- Writing on a slanting surface as it can take the pressure off their wrist
Generalized / abdomen dystonia
- Tapping the foot slowly in a rhythmic way – was helpful to someone who had generalized dystonia and dystonia affecting internal organs
- Holding the chin, earlobe, and neck have helped with a person who has dystonia in the abdomen/trunk area
- Some people with Paroxysmal Dystonia found it very useful to keep a trigger diary to find out what may trigger attacks. Some types of Paroxysmal can be triggered by exercise, stress, caffeine, alcohol, tobacco, etc
- Another person found that changes in temperature may be a trigger, so they found that keeping feet warm in the winter and cool in the summer was helpful. If an attack occurs due to being overheated then applying cold flannel may be helpful.
- Women have reported that their monthly cycle may have a negative influence on their dystonia.
- Someone suggested that when attacks are triggered by movement, it may be lessened or sometimes prevented by stopping for a moment when you feel an attack is coming on.
- Another person suggested that concentrating very hard may help prevent an attack.
Other tricks that may be helpful
- Squeezing the thumb and finger together rhythmically
- Squeezing the earlobe (or using a clothes peg)
These tips are taken from a talk by Professor Marjan Jahanshahi, who heads up the Cognitive-Motor neurosciences group at the National Hospital for Neurology and Neurosurgery in London.
- Stay informed about the latest information and ensure a good dialogue with your doctor (some tips here)
- Take control of managing the dystonia. Article about this here.
- Don't let dystonia become your identity - for instance having dystonia doesn't mean you no longer have a sense of humour or have become a less kind person.
- Accept that coping may require some adaptation - dystonia may mean you need to do some things differently. People tend to cope better if they accept this and make some adjustments.
- Set some clear and achievable goals
- Plan your finances carefully. Problems with finances can lead to stress and make coping difficult. Organisations such as the Citizen's Advice Bureau can give advice if you have a problem
- Try and find ways to have some fun. This is not always easy but can really help wih managing stress.
The contents of these pages are provided only as information and are in no way intended to replace the advice of qualified medical practitioners. The Dystonia Society strongly advises anyone viewing this material to seek qualified medical advice on all matters relating to the treatment and management of any form of medical condition mentioned.
Last updated November 2014.