Primidone

[Doreen]

Hi I am Doreen and new to the Forum. I have recently been diagnosed as having O.T, although have had the symptoms for nearly two years
I first noticed that when I was standing in a check-out queue my legs were trembling and over the past two years this trembling has increased so much that I now go from one leg to the other to keep my balance.
My family say I have "Happy Feet" like the penguins in the film!
I have seen several Neuologists and recently went to Nowra where a Top Specialist comes down from Sydney once a month. They have all studied the Xrays, Scans & several MRI's I have had, but nothing has shown up any cause for the O.T. Over the period of time I have been prescribed Neurontin, Lyrica, Epilim & Valproate. All of these have made me feel very unwell. Prof.Pollard the last Neurologist I saw has prescribed Primidone, which I am a little nervous to start taking, has anyone had any experience of this drug? I would appreciate any feedback.

[Dwight Kraai]

Hello Doreen:
I am on Primidone. I originally started at 50 mg per day. Now I am on 200mg per day. Neurologist says I can go up to 700mg per day. I have not noticed any side effects. Is it helping? I really do not know. My OT is slowly getting worse. I do not know if that is the natural progression of OT or a lessening of the value of primidone. The last time that I saw my Neuro I suggested to him that I gradually go off of Primidone to see if it is actually doing any good. Neuro would not go along with that experiment. There are other medications that I could take, but, based on results of others they do not seem too promising either. Also, I hesitate to start another type of medication as I want to avoid unpleasant side effects.

Best Regards, Dwight Kraai

[zivia]

Hi,
I'm new to the forum.
I was just recently directed to your website by my current neurologist, Dr Paul Greene, who has a practice at Columbia Presbyterian Hospital in N.Y. Up until that time (10 years), I had seen many neurologists who either had never seen my symptoms before or made the wrong diagnosis. As soon as he heard my symptoms and and examined me, he told me I had OT. It was such a relief to finally have the right diagnosis and to find that there were other people like me out there.
I can relate to everyone's personal stories about standing in lines or stopping to talk to someone on the street. It's really a nightmare. You just can't concentrate on anything but getting to a place to sit down.
I would love to attend the meeting in April, but can't. If a DVD will be available, I'd be happy to pay for it. Also, if there are any clinical trials planned for the future, I'd be interested in participating.
Let me also add that there may be many more OT sufferers out there that we just don't know about and that don't know about us. It took me 10 years to find a diagnosis and your website. How many more of us are in the same situation?

Rita

[gloria]

Dear" Newbies" Doreen & Rita: I welcome you and hope the website will be a source of help and comfort. I see Doreen that you are from Australia and maybe you might want to check out the members list because we have a number of people who have OT from Australia. Perhaps you may want to e-mail a few and eventually meet. Meeting others with OT is a wonderful experience. Rita I see that you were diagnosed at Columbia Presbyterian in NY,NY. I guess you know if you read my Experience Page that I was finally diagnosed there after years of searching and a misdiagnosis on the way. Since you did not post your location but was diagnosed in NY I was wondering if you are located somewhere near the NY area. Posting locations will hopefully develop into support groups in our future. Your OT Partner, Gloria

[zivia]

Hi Gloria,
In response to your question, I was diagnosed in N.Y., but live in New Jersey. I'm only about 50 minutes from Manhattan.

[Betty]

Hi Doreen and Rita!

I also wanted to welcome you to the forum. I, too, found this website through searching the Internet. How happy I was when I found others just like me!

Doreen, I have not tried Primidone, but have tried almost everything else. I am currently taking Klonopin. It helps a little, but I think the one others find most helpful is Neurontin, but I am unable to tolerate that. Good luck, I hope you find something which gives you some relief. As Gloria has said so many times ~ there is no magic bullet ~ so we continue to try.

Rita, you said you received your diagnosis at Columbia Presbyterian Medical Center ~ so did I. After finding Gloria's website, I started corresponding with a lovely lady from NY; her name is Harriet. She told me about CPMC and suggested I try to get an appointment with a neurologist there.

I checked the website for CPMC and found Dr. Seth Pullman. I called his office, got an appointment and my husband, Paul, and I flew to NYC in December of 2003. Dr. Pullman did extensive testing on me and said I did, in fact, have OT ~ NO DOUBTS! He gave me all my test results, because I had told him I had been to eight other neurologists and I was being told it was all in my head (mental); with the exception of one who told me I may have MS.

I wish you were able to attend the upcoming meeting in Rochester; but I know it isn't possible for many to attend for various reasons. My husband and I will be there with bells on!

I feel there will be many who will be happy to share what we learn; but the best thing will be the DVD. I think we all owe many people a HUGE thank you on getting this together ~ but most especially Peggy Whitta! She has worked very hard getting this organized; and I am sure Gloria and others have as well.

Good luck to you both; and keep a positive attitude.

Betty

[bill.rishsew]

Hi, I just started Primidone last week. I am also on amitriptyline for issues related to my back injury. I mixed the two the other night and slept for 15 hours. Chalk that one up to experience.

I am seeing benefit with the Primidol. Like the rest of us I have become very adept at finding and anchor or a seat and do so w/o thinking about it. So I have been purposely standing still to see and like I said before, I'm seeing a benefit.

After reading several Primidol user's posts, my only hope is that it isn't fleeting.

I am experiencing some sluggishness and could take a nap any time, any place. The effect for me is soothing. Not like the clonazepam. That stuff was terrible, with no positive affect on the OT.

Time will tell

[gloria]

Bill: I hope your trial with Primidone continues to be of some help. We can not expect too much from any of the med's on the market however as long as it takes the "edge off" it is better than none. All the best, Gloria