Communication

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

Moderator: gloria

Post Reply
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Communication

Post by Theresaann »

I'm new to the site as of a few months ago (May or June, or even early July 2018). Does anyone else find that environmental heat (hot summer) makes the tremors worse?? Also, I'm and RN. Upon review of the suggested and available meds, I would rather have the tremors than risk the awful side effects of the meds, which my neurologist confessed don't really work any way. Theresaann
gloria
Posts: 826
Joined: Sun Jan 18, 2004 1:10 pm
Location: New Jersey, USA

Re: Communication

Post by gloria »

Theresann: Yes environmental heat especially humid weather does make our tremors feel worse and your neurologist is correct there are no meds that work. Gloria
Grammiex4
Posts: 11
Joined: Wed May 19, 2004 8:21 pm
Location: TN

Re: Communication and new drugs

Post by Grammiex4 »

There is a Face Book page for POT people. There's been a lot of discussion about the drug Fycompa (Perampanel). There are several people currently taking the drug and are experiencing the cessation of their tremors. The drug is not new as it has been used to treat epilepsy. The USDA has not approved it for use for OT. However, in other countries and even a few people in the US have been able to acquire Fycompa. It has a long list of side affects as do most drugs, but the biggest hurdle is being able to afford it. My PCP told me today the cost of a 2 mg dose is $35 and the regular dosage is 2-4mg daily. I hope you will drop in on the Face Book page and have an opportunity to read the actual reports from those taking Fycompa. I have had OT for 15 years and taking both clonazapam and gabapentin (both controlled substances and require a new prescription from Dr.
every 3 - 6 months. These drugs have been very helpful to me and I am still able to manage unassisted in most daily activities. Looking forward to another clinical research meeting...I attended the last two in Omaha. Hopefully Dr. Torres and his team are working on the research findings from the last meeting.
drcraige
Posts: 9
Joined: Wed Aug 31, 2016 9:27 am

Re: Communication

Post by drcraige »

Hello Everyone!
I am one of the Administrators of the Fycompa and OT Facebook Page. Our purpose was to have a place for all taking Fycompa (generic: Perampanel) to report their progress with the medication. It is our intent to collect first hand results from our members of what appears to have been a possible major breakthrough in treatment. Unfortunately, we have found resistance of some Neurologists to prescribe because of it's off label use and potential side effects while treating patient with Epilepsy taking much higher doses than what appears to be effective so far for our members. I have reached out to the University of Florida Neurology Department about what we have been doing and I am hoping for a response in regards to assisting with any type of study in regards to the medication that they might be interested in undertaking. In fact, I have personally offered to assist as I am a Podiatrist but no longer practicing. Perhaps someone within our community here can help guide me in obtaining a positive results toward a study. Another hurdle that is faced is once getting a neurologist willing to prescribe there is the obstacle of getting the insurance companies to pay for at least some of the cost of this new and rather expensive medication.
Anyone wishing to become a member to follow progress or add to our data collection please request membership. Note that prior to acceptance into the FB group we are collecting contact information and brief history information so that we can improve our database. Here is the link: https://www.facebook.com/groups/464612497281739/

Thank you!
Craig
Theresaann
Posts: 68
Joined: Sun Jun 24, 2018 6:43 pm

Re: Communication

Post by Theresaann »

Thank you for your efforts. (Sometimes I think only a true miracle will help the annoying symptoms.)
Post Reply