Survey # 1 - Thoughts, Questions, Feedback

Thoughts questions, and feedback on surveys from The OT Survey Team

Moderator: gloria

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OTSurveyTeam
Posts: 1
Joined: Wed Jun 27, 2018 10:19 am

Survey # 1 - Thoughts, Questions, Feedback

Post by OTSurveyTeam »

Hi,

The survey results for prescription medications and non-Rx solutions have been posted on the website. The link to view the presentation can be found on the website Home page under OT SURVEYS or you can click on the following link: https://www.orthostatictremor.org/Surveys/surveys.html. If you have any questions or feedback about the survey, we will be monitoring this post.

Thank You!
The OT Survey Team
Betty
Posts: 391
Joined: Thu Jan 22, 2004 3:08 pm
Location: Melbourne, FL

Re: Survey # 1 - Thoughts, Questions, Feedback

Post by Betty »

I would personally like to congratulate the team of P. Whitta, M. Muir, P. Cirincione, and A. Muir for their outstanding job of obtaining all the information in the survey and putting it into such an excellent report.

I would also like to thank Jeff for his outstanding job of putting all the information on the forum ~ job well done by all.


Betty
lynnemariehenry
Posts: 1
Joined: Wed Feb 14, 2018 2:31 am

Re: Survey # 1 - Thoughts, Questions, Feedback

Post by lynnemariehenry »

I found a neurologist who9 prescribed me a new medication called Fycompa. It really helped my symptoms for orthostatic tremor by 50%. It worked within 4 days. I have suffered with this disorder 30 years, and have had no results with various medications. This medication is expensive, but it is worth it! Perhaps you can discuss this medication with your neurologists. Lynne Henry
Jolanda
Posts: 8
Joined: Sat Apr 27, 2019 1:14 pm
Location: the netherlands

Re: Survey # 1 - Thoughts, Questions, Feedback

Post by Jolanda »

Hello Lynnemariehenry,

Since when do you take Fycompa/perampanel? for a month, four months or longer?
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