Surveys of medications/treatments and discussion

Moderator: gloria

By bonniekline100
#6158
I have had Orthostatic Tremors for about 5 years. I was referred to Dr Troung in Fountain Valley Ca after two doctors had no idea even when I told them what I had as thank you to the internet I just had to put in can't stand but can walk. I didn't tell him this and he ran to get his scope and listened to my legs and said I know what you have and I was correct and he said wow this is a rare disease. He treated it like Parkinson's with Neupro and Clozapine but these were not working. He finally put me on Rytary the generic to Ladopa less expensive and it worked!!! I have been taking it for about 3 weeks now a low dose 195MG and I can stand again.
He has not taken away the Neupro or Clozapine and I have not at this day called him to let him know the happy news. It is the Saturday after Thanksgiving and I am still new to this drug but what a big difference. If I stand in line for example at the cash register to long I do start to get a little shaky but not like it was.
Three times a day 7am 1pm and 7pm with food and really important to take them on time
I wanted to share this with this site as quickly as possible.

Bonnie Kline
bonnie.kline1@aol.com
By annettarn
#6160
Hello and Welcome.
Have you had the chance to read the Global Survey that my husband and other OT patients worked on. Its very informative about OT and Medications. Click on the Website button at the top of page and then click on the "New OT Survey" button.
Many people from this forum and other groups of OT patients participated in the survey!
Hope you find it interesting. Below is a link to the Survey as well!

https://www.orthostatictremor.org/Surveys/surveys.html
By bonniekline100
#6297
The last time I posted is below. To bring you up to date today is August 13 2019 and I am still taking the Rytary. I have dropped the Neupro patch. The Rytary works without it . I am able to stand just like I used to. This drug is a game changer and I hope all of you will ask your Doctor to at least allow you to try it. I take it 3 times a day and now one in the middle of the night if I go to the restroom. He did this because I told him I am having trouble washing my hair again and have the chair back in the shower. He gave me a lower dose and said if I wake up take it and if not no worries. It helped and the chair is out. I am still taking Rasagiline and Clonazepam as well he said he wanted to continue these
He said I will see you in 6 months call if I need him but he believes I am good. He gave me my life back. I have a swim class every day and have lost 27 lbs and 3 sizes. I can feel the tremors sometimes when I get out but what a great workout and I just walk to my bench and sit get dressed. Sometimes I shower but I know the tremors may make it a problem so just get dressed and walk out and within minutes I am great again.
I'll keep you up to date for the next 6 months but I have been taking Rytary since last Nov 2018 and like I said it gave me back my life
Bonnie Kline
562412-0471
By james white
#6400
Bonnie, this sounds wonderful! I have been struggling with this for 20 plus years with no hope of a cure. I am taking Clonazepam and Buproprion with no discernable positive result. I would like to know what your dosage is for the Rotary so I can ask my neurologist about this.
Thanks for the info!!
Jim

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