Much information was shared at this meeting. A participant shared her experience with Provigil. She was taking 100-200 mg. for 6-12 months to treat her narcolepsy. She began to experience a negative side effect- sensitivity to light, esp. fluorescent light. The side effect was severe enough for her to want to change medications. She changed to Adderall, but experienced negative side effects. She saw a T.V. report about how Provigil was a medication with very mild-to unnoticeable side effects, so she decided to go back on it, but in a smaller dose. Without her Dr.'s knowledge, she cut her dose to 25 mg./day and experienced help for her narcolepsy without side effects for the 2-3 years she was on this low dose. Then she increased it to 50 mg./day, with an extra 25 mg. later in the day if she needed it. She continues to be on this low dose, and has no sensitivity to lights. Her neurologist was shocked to learn that the medication was helping her at such a low dose.
Information available to participants:
1. Occupational Therapy Associates- Watertown MA article about OT treatment for adults
2. list of websites that offer sensory-based products
3. flyer from Marilyn Hays, Autism Consultant and Advocate, looking for adults with Autism or Aspergers to offer information for her dissertation.
A participant came up with a great strategy to help her understand SPD, and help keep her arousal level down. When someone is making a noise or causing a visual distraction, she will try to determine what sensory input that person's body is seeking. If they are picking their nails, she will observe if the person is picking in order to focus or relax. Because her mind will be busy trying to figure out the other person's sensory needs, she will be distracted from being agitated by the movement. Great idea.
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