By avoiding the triggers that can cause an dystonia attack, people with dystonia can limit potentially embarrassing flare-ups. Equally carers or anyone who has friends/colleagues with dystonia, will gain from reading the below.
So, what are these triggers? (Remember to add your own….)
1. Hangover. If you drink too much then (for me) this really accentuates the dystonia symptoms.
2. Lack of good quality sleep (or not getting enough)
6. Doing too many activities (moving about, doing tasks in general)
7. Spicy foods
8. The high pitched whining of a dentist’s drill (which is why knowing a dystonia-friendly dentist is so important)
9. ‘Having’ to keep still without the luxury of being able to support my chin eg. at a hairdresser’s
10. Loud noises (particularly high pitched)
11. Flashing lights
12. Being startled
13. Temperature extremes (cold triggers faster than heat, as the chills can easily transition into a flare up of dystonia for me)
14. Travelling in cars if I am in the front seat as a passenger.
15. Talking too much
16. Laughing too much
17. Excess visual stimulation,
19. Loud bass music
20. Any viral illness
21. Eating at a resteraunt that is very noisy-I try to seat looking towards the wall or at least the quietest direction.
22. A feeling I am ‘on show’ eg in a restaurant. Thus I always sit near a wall…initially dystonia was diagnosed as ‘social phobia’
23. Wal-Mart,All the activity with shoppers or overhead music,announcments
25. Doing dishes triggers upper back and shoulder spasms
26. Medications! Some offending medications include:
29. Environmental and task-related factors are suspected to trigger the development of focal dystonias because they appear disproportionately in individuals who perform high precision hand movements such as musicians, engineers, architects and artists.
30. Chlorpromazine can also cause dystonia, which can be often misjudged as a seizure.
31. Transcranial magnetic stimulation.
The answer to this question is clearly yes. This is distinctly different from widespread environmental exposures to which large numbers of dystonic patients could be exposed. A number of uncommon toxins are capable of causing brain damage centered in the motor control region known as the basal ganglia. Dystonia may be one prominent feature experienced by patients with these exposures, but it is extremely uncommon for “isolated dystonia” to be seen in such patients. In other words, the vast majority of patients exposed to toxins (for example, manganeses) have additional neurological problems associated with the dystonia. Possibly the most common feature in such patients is the presence of a Parkinson’s disease-like state.
What can be done….
“I get into my body and out of my head. First I sit quietly and meditate and visualize my neck straight and my body free from pain. I have mobility. Then I see myself accomplishing all I want to accomplish (even if’s it’s not likely at the moment). I pray for my condition to be released because it no longer serves me.
Then I dance for 10 minutes, really working up movement and stretching. I rest and use a decompression neck device to loosen my neck for 10 minutes of traction. Sometimes I doze off and sometimes I feel recharged and do Facebook and connect with others or go on CD/ST boards and try to give others hope (this always makes me feel better). Then I cuddle with my cat (my total gift), drink some water (always need to stay hydrated)…later on I do trigger point work and kneading fingers massage for 30 minutes while I zone out to a mindless t.v. show. I make some phone calls to connect with others and then might do some yoga (even childs pose and a few downward dogs really stretch out my body) Depending on my day, I might go to psychotherapy or food shopping or a 12 step meeting or even dinner with a friend…BUT I never do more than 2 big things a day. I know my limits and that the next day I will pay a price. If I have a big day planned, I stay at home and rest on my balcony with a good book the next day or watch Louise Hay videos on healing your life…..”
What is needed is for you to devise your own Action Plan!
“It is important to realize that even people who take their dystonia medicine exactly as prescribed and who work to avoid triggers can have the occasional dystonia attack. So, it’s essential to have what is called an “Dystonia Action Plan” in place for those times.
An Dystonia Action Plan is a written guideline that can help you:
Identify the signs that your dystonia is starting to slip out of control. These signs include both symptoms and your peak feelings at the time.
Know exactly what action to take, based on how you are feeling.
Act quickly on danger signs to prevent or stop an dystonia attack.
When your dystonia is not under control, some of the signs that you should not ignore that mean your dystonia is getting worse are:
More frequent dystonia symptoms
More intense dystonia symptoms
Symptoms waking you up at night
Missing school or work or appointments because of dystonia
Dystonia symptoms change a lot from day to day
Symptoms do not respond as well to your usual dystonia medicines
Need to use your break-thru med more often than usual. DO YOU KNOW WHICH ONE ?
The important thing to realize is that you can still have a healthy, active life when living with dystonia, although you may have to pace yourself at times or make some adjustments here or there.
I think the key is pacing yourself each day, not overdoing things or even overmedicating yourslf with meds. But, intruth none of us are immune to feeling isolated at times because of dystonia. TRUE??
Remember that reducing the types of movements that trigger or worsen dystonic symptoms provides some relief, as does reducing stress, getting plenty of rest, moderate exercise, and relaxation techniques.