This is the "main" forum that contains new introductions and other topics. A place to talk about your experiences, thoughts and advice.

Moderator: gloria

By margie1627
#6077
I am surprised that there is no response or discussion of the very interesting report posted by Gloria.
Complete resolution os symptoms of Primary Orthostatic Tremor with Perampnael. Has anyone tried iT
or know anything about it? This sounds very exciting to me. I will follow up with my neurologist in early July.
Anybody else excited about possibilities?
By Ann Dodd
#6079
Brings back so many memories to me. Doctors not knowing what I had. It was so frustrating & made me think I was imagining it. It graduated, got worse & I eventually found a Neurologist, who told me what I had. Then had DBS for Primary Gait Freeze. That helped me so much for 7 wonderful years. Had to eventually have the batteries switched off as onewire snapped & the other seemed to be shorting. I am now struggling with slight dementia & walking has worsened. Hope you all learn that you never give up even though the odds are against you. Have faith in yourself & teach yourself to walk again, even if it is slowly with aids. Keep going my friends. Ann
By drcraige
#6140
There has been a lot of buzz about Perampanel on Facebook. In fact, we have created a Facebook Page dedicated to following fellow POT Members presently taking the medication. Seeing some positive signs from people. Anyone interested in following and gaining information join us. Please note we do require answers to a few questions to gain access. Also, since we have a mandatory Membership survey to be taken once you are a member. The purpose is to gather information so that we can return trend information back to the members at large. Presently we are doing the best we can to conduct what we are calling a "Clinical Online Study"using measured metrics that members are recording. This is in addition to their reporting their progress. The link for the Facebook Group is: https://www.facebook.com/groups/464612497281739/
By Lake of the Woods
#6177
It would be interesting and beneficial if more of the results of this drug could be posted on this website.
I don't do Facebook so would be left out of this information.

Thank you if you can help,

Peggy
By Lake of the Woods
#6179
Hello,
I was aware of this study but thank you for sending this link. I actually forwarded it on to Dr. Torres.
I had advised him of this drug previously and how it is helping some people. He replied that he just hopes it is sustainable - which is the big question.

I would love to see comments by people trying it who report into the Facebook but that may not be possible.

Thank you
peggy
Perampanel

Hi Peggy. Take a look at this web page and see w[…]

2017 Omaha OT Meeting and Research