The Orthostatic Tremor Forum (archive)

I have had OT since 1995 and it has continually worsened to the point where I cannot continue to work. My physician, a neurologist with a speciality in movement disorders, has worked with me over the years trying many many different medications. The most consistent one has been Clonazapam. At one point I was up to 10mg/daily. Now I am down to 4mg daily and being weaned off to try yet another drug (it is meant for the tremors of Parkinsonism), but he has suggested that I try it to see if it will help with the tremors. The name of the drug is Mirapex. I wonder whether anyone of you has taken this medication and if so, whether it has helped in any way. If this med does not help me, I will go back to Clonazapam, taking as low a dosage as I can since the higher the dosage the more inclined I am to fall asleep. When I worked, I was more active and the affects of the drug were not as bad, but now that I am at home most of the time, the minute I sit for a few minutes, I fall asleep.

Yes, I too have lower back pain and I feel that it is due to the OT especially when I attempt to stand for longer that I can. It puts a terrible strain on the lower back and I need to find a place to sit. I'm sorry I could not attend the OT meeting. I hope to hear more about it in the postings. Unfortunately, I was really afraid to fly (with having to stand at security check lines, etc). I did this about 2 1/2 years ago when I went to visit my mom in FL and barely made it through security; I felt like I was going to just collapse. I never thought I would need a wheelchair, but I'm beginning to resign myself to the fact that if I ever get up the nerve to fly again, I will definitely ask for a wheelchair. I'll check back when I start taking the Mirapex to let you all know if I have any luck with it.

Kaylie

Hi Kaylie,

I just read your posting and thought I would reply. You said you have had OT snce 1995; and feel you have gotten continually worse ~ to the point you can no longer work. I am so sorry to hear that, but I do understand the problem of getting worse as time passes.

I have had OT approximately 12 to 15 years, but could not get a correct diagnoses; as is the case with many of us. I was finally diagnosed in 2003 at Columbia Presbyterian Medical Center in NY, by Dr. Seth Pullman. It was such a relief just to finally have a name for this problem and to know it wasn't in my head ~ as I was told!

I have tried all of the medications suggested to me; but I am very sensitive to medications, so I have not had good luck. Most OT friends find Neurontin to be very helpful and are able to stand ~ to some degree ~ a bit longer and walk a bit better than I.

I, too, have found Clonazepam (Klonipin) works best for me, wth the least side effects. It doesn't remove my tremors by any stretch of the imagination; but any help ~ no matter how slight ~ is better than none. I only take 2 mg. in the a.m. and 2 mg. in the p.m. My doctor wanted me to take it three times daily and try to work up to more, but, like you, if I am not active and sit down, I will fall asleep. I try to stay as active as I can, by my legs are very weak.

My husband and I belong to a fitness center, so I go there to exercise and try to keep my upper and lower body as strong as possible. Yet, no matter how much I exercise and how much weight I can lift, or press with my legs; (always sitting); when I get off the machines, my legs are like "wet noodles" and I must sit again before I can move on. I ride the bike and use the treadmill; but again, when I stop, I can't walk. I even had a personal trainer ~ twice ~ and each would tell me I was getting stronger, yet weaker. They didn't understand why. Of course, it was and is the OT. I know it is important to keep the body as strong as possible; so I will continue.

Now regarding Mirapex; that is one I was given and was unable to tolerate. But....as I said, I am VERY sensitive to medications; so I hope you will find it works for you. If you are like me, you at least want to give it a try, because you never now when you will hit on THE one which will work for you. Good luck and keep up posted; we are all very interested.

You mentioned you also have lower back pain, I think that may be common as well, due to OT. It does put such a strain on that area of the back when trying to stand and balance; so we must either sit or lean on something.

You mentioned you were sorry you were unable to attend the meeting in Rochester; I am sorry you couldn't make it too. It was a wonderful meeting and so good to meet others who have the same problems. We could all relate to one another so well.

I can understand your fear of flying ~ due to having to stand for security, etc. But....next time you want to fly somewhere, ask for a wheelchair and it will be brought to you and you will be escorted through the security line and to the plane, never having to walk. Then there will be a wheelchair waiting for you at your destination. No problems! It took me a long time to admit I needed one, but I have finally given in and feel very comfortable asking for help. You will feel much more at ease.

Don't let the opportunity to visit your Mom be caused by your "fear of standing", just use the wheelchair. You will be happy you did. You said your Mom lives in FL ~ so do I. Where in FL does she live? If you do come back down here, perhaps we could meet. I have met so many OT people because they are visiting the state or a relative; and we get together for lunch so we can compare notes. It makes such a difference to meet and chat with someone else with OT. You don't feel so alone.

I have had the pleasure of meeting five different ladies before coming to Rochester; so I knew a few upon arrival. Still it was exciting, getting to see them again and to meet new people.

Do keep us informed as to your progress when you start Mirapex. I do wish you luck and hope this will be the one for you!

Betty

Hi Kaylie
I also attended the meeting and met up with Betty and everone else.It was my first plane trip since being diagnosed and I used a wheelchair and carried the cards that Jeff printed for us.I have OT and refuse to let it win ...by winning I mean making me stop traveling or doing the things I want to do. I travelled from Spain to be there and apart from a couple of security guys who didnt understand till I told them that I would sit on the floor if I had to everyone else was helpful and understanding.The wheelchair is the only way at an airport.I have had OT for 8/9 years and I have said this before the fact that I know what I have is a help in its self.Please listen to the advice given by the experts and by experts I dont mean the Doctors the experts are all the people like Gloria ,Betty and all who live with this condition on a daily basis....my tip of the day is dont wear light colored pants they get dirty when sitting on car hoods....how many of us have had to do this when we meet someone in the street.Im sure it was Gloria who told me about how she clears spaces in dept stores to sit.As far as medication hopefully you will find one that suits you.At the moment I am not taking any and am coping fine ...but if you are unable to do the things that you want or need to do try and find one that helps .
You have a lot of friends here, every one of us is here for you . We will share our tips and opinions that is the only way.

Mike

Anyone happy with using Mirapex? Or not at all happy with it?

After trying CLONAZEPAM and also GABAPENTIN, I have just started to try MIRAPEX. Took a tiny bite day before yesterday in the evening. Another tiny bite in the morning, and again in the evening yesterday and today. Too soon to say if it will be helpful, since each time I start a new prescription it feels weird at first, even at a tiny dose.

When I stopped the Gabapentin slowly and then was without either it or the Clonazepam I really felt the difference. Being on nothing is the pits. Restless legs and now I remember how hard it can be to stand or to walk slowly about.

The small bite of Mirapex - about a quarter of a tablet soon fixed the restless feeling in the legs but not sure if it is helping overall with stability.
The side effect that bothers me the most is kind of pulsing feeling on the right temporal lobe of the head. The other drugs do that as well but not as much as I have felt it the past couple of days. The other side effect is drowsiness, but when I tried to get to sleep yesterday and today, I was too aware of the strange feeling with the drug to fall asleep. I'm going to try again now.

I wish everyone a happy healthy New Year and may the prefect solution come up for all of us to solve the OT conundrum.

Lily