The God Squad
Home | Links | Biography | The God Squad | Disability | Child Abuse | Marijuana as Medicine | Legal Drug Addiction |
Dystonia Links
Dystonia Main
I Never Get Drunk
External Links
Care4Dystonia.
Early-onset primary dystonia.

sitemap    privacy  © 2003

What is Dystonia?

Living with Dystonia

Living with an illness such as Dystonia can heighten feelings of stress and depression in some people. There may be days when you feel angry about having Dystonia and the limitations (physical) it can cause in your life. You may dislikke taking medications on a daily basis. You may feel guilty about having Dystonia. You may worry about Dystonia and the genetic factor. You may fear needles and electromyography machines. You may evehn feel rejected for being different. There may be days when you feel lost, lonely or sad.

Should this be the case, try to remember that just about everyone with any illness (asthma, diabetes, heart disease) might at times have similar feeling. But you can choose the way you handle dystonia on a daily basis. A "take charge" attitude is a major step in dealing effectively with Dystonia.

Review the following signs of stress and depression. If you are feeling any of these symptoms on a continuous basis, please do speak to your doctor. It is important to recognise that the following signs may also be a direct result of your Dystonia (for examplle, headaches can occur with cervical Dystonia) or the medication used to treat Dystonia.

Common Signs of Stress/Depression

  • Change in appetite
  • Alcohol or drug abuse
  • Difficulty sleeping or sleeping too much
  • Fatigue and lethargy
  • Feelings of helplessness/hopelessness
  • Crying
  • Lack of social interests
  • Feelings of self-blame

What to do when signs intensify:

  • Ask for help.
  • Get plenty of rest.
  • Talk about it with family and friends.
  • Don't avoid your feelings .
  • Seek individual or group support.
  • Get involved in social activities
  • · Organise your time and activities.
  • Maintain good nutritional habits.
  • Inform your doctor and review,
  • Your treatment strategy.
  • learn more about Dystonia.

 

BOTULINUM TOXIN

The beneficial effects of Botulinum Toxin can provide significant improvement to the various forms of Dystonia -- lasting approximately 12 weeks. It's side effects can last for a week or more, which may include mostly fatigue and bruising. More specific ones are commented on below. These possible side effects typically resolve within a few weeks after injection. The presence of such side effects should be reported to your doctor for review, prior to subsequent treatments.

Specific Effects of Different Injection Sites

Type of Dystonia Possible

Possible Post-Injection

Temporary side-effects&Comments

Blepharospasm

(Involuntary Eye Closure)
  1. Eye Irritation.
  2. Dry or wet eye.
  3. Double or blurred vision.

Hemifacial Dystonia

(Facial Spasms)
  1. Dry or wet eye.
  2. Facial Droop(lasting for just a few days).

Cervical Dystonia

(Spasmodic Torticollis)

  1. Neck weakness and stiffness.
  2. Swallowing difficulties.
  3. Head tremor.
  4. Flu-like illness, fatigue and nausea

Spasmodic Dysphonia

(Spasms Affecting Vocal Cords) ·
  1. Breathlessness
  2. Difficulty swallowing, choking or wheezing.
  3. Hoarseness.

Oromandibular Dystonia

(Spasms affecting Face, Jaw, Tongue.)
  1. Swallowing difficulties.
  2. Nasal speech.

Occupational Dystonia

(Writers Cramp)

  1. Local limb weakness (which could be helped with physical therapy)

The purpose of Botulinum toxin treatments is to weaken muscles. The side effects are usually due to the muscle weakening or other properties of the toxin. Side effects that are temporary may be a clue to consider changing the treatment strategy in the future.

DEMYSTIFYING DYSTONIA. Written by Rebecca Serdans, R.N. B.S.N. C.D.E. and Mitchell F. Brin M.D.