The Orthostatic Tremor Forum (archive)

I was recently diagnosis with OT taking Lycia 210 mg a day (somewhat working) does anyone have cervical issues like DDD, or been fused?

Hi! Deb:

In answer to your question about cervical issues like DDD (Degenerative Disc Disease) my personal experience was a history of stenosis of the spine and degenerative scoliosis. In 1998 I had spinal surgery (decompression laminectomy, bone graft & placement of instrumentation ) . My back pain stopped however my OT symptoms have remained.

How long have you had OT and do you have any idea what might have caused it ?

Gloria

I have recently gone to another doctor in Tampa area trying to find relief for my OT....I have tried in the past Sertraline 50 mg also Clonazepam 0.5 mg and both of them made me like a Zombie , only wanting to sleep , zero energy and my hands would shake so I only stayed on them for about two weeks, than I was not using anything.....My new doctor in Tampa, Florida put me on Gabapentin taking 600 mg per day but been on them only two weeks, than yesterday went to my own doctor and was telling her that I know of a person taking Propranolol 60 mg. extended release and she has no side effects and sometimes can stand from five to seven minutes so she said lets give it a try for thirty days and see what happens ....she said I could stay on both of them at the same time, so I will let you know what happens.... I do not know if any of you are on two different pills at the same time...Can anyone tell me how long it takes before the pills kick in as I have not seen results on the Gabapentin yet but like I said it has only been two weeks and the other I just got yesterday, any information will certainly help,,,,we just need to find something that will work for all of us, we will all have a Giant party when that happens. Good luck to all and lets find a cure!!!

Dottie

Hello Dottie,
I use Gabapentin, 3 pills a day = totally 900mg. I have been using them since January this year and I feel they help. I have no side-effects and I feel that I can stand up to a minute, sometimes a bit more or a bit less depending on situation. As I have about 5 seconds standingtime without drugs, I'm very happy with this situation.

It seems to me that OT and drugs and experiences vary very much.. and that we just have to try and see what works specifically for me/you. And, perhaps most important, learning to live with OT and adapt life so that we manage the best we can.


Good luck!

Dottie: I agree with Golfnut's reply and add that I have been on Gabapentin for 11 years without side effects .  However,when we are on any drug we must stay mentally and physically active as possibile and become “creative coping geniuses.” Gloria 

I have been on Gabapentin for four weeks now 600 mg 2 three times a day and on propranolol for two and a half weeks and really no results , I probably will have to ask the doctor to up the Gabapentin to 900 a day...last week something strange happened to me I had gone to the store to exchange something, using a grocery cart, which usually even though I hold on I still get the shakes, there was someone at the counter taking a long time (by than I would have had to leave and walk around the store because I cannot stand still) there was also someone in front of me in line, and would you believe I stood without shakes for about ten mintues..I felt like getting the loud speaker and yelling , guess what I am standing and not trembling, but when I got home I was my same unsteady self...It sure was a pleasure shopping that night....Has that ever happened to anyone else...I wonder how that all happened....

Hi
I really find a difference with the gabapentin.
I take 1200 a day now.
Sometimes i notice it works better tha n others.
Stress also play a part in our condition.
Stella

Hi
I Also have been diagonsed with DDD.
Stella

I am still taking the gabapentin, but now starting tomorrow on 3 pills three times a day which will be 900 mg , so will let you know how that works out for me, can anyone tell me how long it takes before it kicks in...also what is the longest someone has been able to stand as right now I can only stand for just a few seconds before I get the tremors ...hoping with the increase of the pills that things will change for the better...I also take 60 mg of propranolol per day been taking those for about a month...someone said stress does not help and I have been under stress as my son in law has ALS/Lou Gerig disease and the family are going thru financial problems plus the medical problems so it affects all of us...wish I could say I was stress free but that would be lying.Just want to keep up on what helps and people experience with the drugs seeing the drugs are new to me. Hope research finds a cure for all of us. Please keep in touch, I try to check the website often to see if anything is happening, wish more people would comment on our site..

To Dottiesport:
As mentioned (see earlier post in this thread) I use Gabapentin 900mg a day. Before starting on this drug in January I had 4-5 seconds of standing time. Now up to a minute on a good day. It took a few months to get where I am now. Both because the drug needed time to work it's magic I suppose, but also for myself to realise it had actually become a much better situation. Being used to a difficult situation I had difficulty to believe that things had improved so to speak.
But comparing between us all here on the forum is difficult. We have such varied situations as to general health, medical problems, stress, family-situation and/or even climate. Who knows what plays part or not..

I hope gabapentin will work magically for you too,
take care!
the nutty one