Community Forum Archive

Closing Forums - Big Mistake

Thu, 06/11/2020 - 20:59
I think closing the forum is a big mistake. I don’t use social media for a number of reasons and I haven’t had good experiences with the local Epilepsy foundation being able to connect me with resources. The forum was the first place that I was able to ask a question and get answers. Additionally, I have been an active member on here and helped many others since to get the resources that they need. It’s the only place that some of us are able to share our experiences with epilepsy, especially with all of the COVID restrictions. Some of us live too far away from a support group and many of these are cancelled right now anyway because of COVID-19. While there may be limited activity on the forum, now...it also has been a helpful resource that shows up when I search some of my questions in Google because of the older posts. For example, I just started on Clobazam and have been having vivid dreams every night since the dosage was increased to 10mg. When I put it into Google search, “Clobazam side effect dreams”, two of the hits that I got were from the forum where at least two other people had posted up their experience on this same medication and they described having vivid dreams every night and they also associated it with Clobazam, some of the other elements were similar to what I have experienced as well. My point is, that you are making a decision off of only what you can observe and not the total value of the forum. There is more activity on the forum than what you may be able to see because of the limitations of your technology.

Comments

I agree!  I tried using

Submitted by birdman on Fri, 2020-06-12 - 12:48
I agree!  I tried using facebook and twitter and found them too confusing.  When this forum closes I will not be using social media. And I live in rural area and too far away from any support group to part of them.  Good point -- there are many who just get referred here when they do a search. I wish the Epilepsy Foundation could measure how many visitors they get.

The local chapter provided me

Submitted by Patriotrehab on Fri, 2020-06-12 - 15:36
The local chapter provided me with the email address for the person we should contact at the national level. His name is Nathan Devault. His email is: n.devault@efa.org 

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