Search found 11 matches

by Grammiex4
Wed Jul 22, 2020 1:14 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Tinnunitis
Replies: 4
Views: 4196

Re: Tinnunitis

Yes, I have had tinnitus for over a year. I do try to deal with it although it can be annoying at times.
by Grammiex4
Thu Mar 14, 2019 11:00 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Perampanel
Replies: 20
Views: 8311

Re: Perampanel

Hi Peggy: The results from Perampanel (Fycompa) seem to be varied. Some people are helped by the med, some have bad side effects. The cost is also prohibitive for most people in the US. Some Dr.s are giving it to OT patients......even Dr. Torres in Nebraska prescribe it for a patient who came for co...
by Grammiex4
Thu Aug 09, 2018 10:53 pm
Forum: Research Papers
Topic: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel
Replies: 13
Views: 13504

Re: Complete Resolution of Symptoms of Primary Orthostatic Tremor with Perampanel

Please read my post concerning this drug and the results people are getting.
by Grammiex4
Thu Aug 09, 2018 10:47 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Communication
Replies: 4
Views: 3925

Re: Communication and new drugs

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...
by Grammiex4
Mon Jul 31, 2017 12:56 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Balance problems
Replies: 11
Views: 3531

Re: Balance problems

I also have balance problems. Mainly after standing for a period of time and then trying to move again. It's almost like you are "frozen" in that spot and it takes some help to get going again. Looking forward to the Omaha meeting!
by Grammiex4
Sat Mar 11, 2017 11:56 am
Forum: 2017 Omaha OT Meeting and Research - Dr Torres
Topic: 2017 September OT Meeting/Research
Replies: 22
Views: 12189

Re: 2017 September OT Meeting/Research

Hello Everyone:
I am looking forward to the September meeting in Omaha. My husband and I plan to attend again for this meeting.
We will drive from Tennessee to Nebraska as we did in 2014. Will be great seeing all of you again and some new
faces I am sure. :P
by Grammiex4
Mon Jan 16, 2017 6:04 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Standing Time? this is how long I can stand...
Replies: 36
Views: 9832

Re: Standing Time? this is how long I can stand...

Hello Everyone: I just received the notice regarding the September meeting in Omaha! I am looking forward to the meeting, study and most of all seeing everyone again. I was able to attend the last meeting and it was such a blessing to meet others with OT. I had self-diagnosed my condition through re...
by Grammiex4
Thu Aug 27, 2015 8:19 pm
Forum: 2016 Baylor College of Medicine with Dr Jankovic
Topic: OT Presentation, March 10, 2016 with Dr. Joseph Jankovic
Replies: 27
Views: 9983

Re: OT Presentation, March 10, 2016 with Dr. Joseph Jankovic

Patricia Ryan, Hixson, TN. Very interested in attending the meeting in Houston.
by Grammiex4
Thu Aug 27, 2015 8:16 pm
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: Shaking 30 to 40 minutes after eating
Replies: 3
Views: 2281

Re: Shaking 30 to 40 minutes after eating

Interesting that you mention shaking AFTER eating as I find if my eating is off schedule :P :P my tremors worsen when I need to eat. Therefore, I try not to allow myself to get too hungry or allow too much time to lapse between meals.
by Grammiex4
Sat Jan 17, 2015 11:45 am
Forum: OT- DISCUSSION, Questions, Thoughts and Advice.
Topic: How is everyone?
Replies: 719
Views: 194162

Re: How is everyone?

Hello Everyone, I don't post often, but reading the forum this morning prompted me to say 'Hi". I attended the Omaha meeting last fall and still have great memories and would love to see everyone again. That was the first time I met anyone else with OT and it was a great comfort to know there a...
by Grammiex4
Mon Oct 06, 2014 12:15 pm
Forum: 2014 UNMC - OMAHA OT Meeting - Research
Topic: Reports from the Omaha Meeting and Research 2014
Replies: 39
Views: 11850

Re: Reports from the Omaha Meeting and Research 2014

The week I just spent in Omaha with 44 others with OT was an awesome experience. I decided to drive the 1000 miles from Tennessee even if I wasn’t accepted for the study. I had spent 11 years never knowing anyone else with OT and I wanted to meet others. I also had self diagnosed myself after readin...