A place to post any new research papers that you find on OT

Moderator: gloria

Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel
María Ruiz-Julián1, Jorge Luís Orozco1 & Alexandre Gironell1*

1Movement Disorders Unit, Department of Neurology, Hospital de la Santa Creu i Sant Pau, Autonomous University of Barcelona, Catalonia

Background: Primary orthostatic tremor (POT) is an infrequent disorder whose physiopathology is unknown. Current medication is largely ineffective or only offers mild benefits.

Case Report: A 75-year-old female with refractory POT treated with 4 mg/day of perampanel achieved complete symptom resolution. Owing to adverse effects, the patient reduced intake to 2 mg/day, but even at this lower dose the benefit was maintained.

Discussion: We report the complete resolution of POT symptoms using low doses of perampanel, an antiepileptic drug that blocks glutamate-mediated post-synaptic excitation. Further controlled studies are necessary to confirm this finding.

Link To Article
I'm surprised at the lack of interest in this news. Has anyone made any effort to try perampanel?
I certainly will explore this with my neurologist when I get to see her in July. (unfortunately I have to
wait till then because of maternity leave, but i sure hope someone can substantiate this result and report it.
Gloria what do you think?
I asked my neurologist today about Perampanel. She pointed out that she found only one case study for one person who was helped with orthostatic tremors. She also said that it was expensive. I checked on line and what I found as a discounted price for 30 2 mg tablets was $457.39 for a 30 day supply. I also found that this drug has a number of side effects, with mood disorder being a problem. As much as I would like to be rid of orthostatic tremors, I am leaning towards not trying this drug.
Perampanel: Too risky and too expensive. I'd rather deal with the constant movement and extreme fatigue . See your search engine (Google, e.g.) for undesirable side effects., e.g., loss of coordination. Some day, some researcher will find, if not a cure, at least a reasonably effective medication. Remember that all medications are chemicals and that, no matter how many clinical trials are conducted, there can still be glitches and untoward side effects in the general population. Good luck to all of us OT "sufferers".
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/
I began taking Fycompa 1 mg. on Oct 22, 2018. I cut a 2 mg pill in half. I take it in the morning. Tried to take it before bed, but it disturbed my sleep. I experience some sleepiness about an hour after I take it, but that is the only side effect so far.

The first day I took it, I felt a strong relaxation of muscles on the right side of my body with tingling ( both pleasant sensations) followed by a cessation of the tremors. I get a little bit of right sided chest pressure, that I feel is muscular relaxation?? Not sure.
I get a little bit tired when standing a long time, but nothing compared to the fatigue of standing before the Fycompa.

My GP did not want to prescribe this med (don't blame her). I was seen by a neurologist at the Yale Movement Disorders Clinic. ( I live near Yale)
I printed out a coupon on line (you can also download a coupon on your phone) to get a discount on the med. My insurance did cover some of the cost as well.
Hope this is helpful to others
Hi Marianne . Just out of interest I Googled Fycompa and was not very impressed by what came up. It seem the side effects out weigh any benefits as far as I can see. It seems that all the medication for OT has some dreadful effects on the mind.
Of course, I'm not a doctor so I can only suggest you take a look your self. I know we are all hoping and preying for a breakthrough.

Best wishes from
Adrian O'Connor

I'm in contact with my neurologist here in Sweden […]

Hi everyone and many thanks for all the input on m[…]