Orthostatic Tremor Rating Scale Project

Dr. Peter Bain, faculty member of Imperial College of Medicine, requests help from orthostatic tremor (OT) patients worldwide in assessing the severity and effects of OT. Dr. Bain’s rationale is the OT scale could be used for measuring the efficacy of specific treatments, and/or testing for new medicines. This project is a great opportunity to help Dr. Bain in “constructing a scale” for a disabling tremor whose response to drug treatment is overall unsatisfactory.

OT is a tremor that shares some overlap with essential tremor (ET), sparking constant debates as to whether OT is a subtype of ET. The best way to describe OT is feeling unsteady when standing, but feeling relieved when sitting or walking. The frequency of OT tremor is 13-18Hz in comparison to the average 6-8Hz frequency of ET. OT is not necessarily confined to the lower limbs. OT can appear in the arms, and head and trunk tremors can affect a small percentage of OT patients. Professionals argue that the presence of the upper limb tremor in OT defines it as a variant of ET, but the difference in frequencies, the poor response to the first-line ET agent Propranolol, a higher mean age of onset (51.4), the predominance of more females, and a weak association with inheritance, suggest OT is a separate and unique tremor. Tremor Action Network has referred USA OT patients to Gloria with the OT Resource, and collaborates internationally with the National Tremor Foundation that has a UK POT Support Group. If you have been diagnosed with OT please consider becoming involved in the OT project by responding directly to Dr. Bain’s letter, either by email or written correspondence. Dr. Bain’s request for your participation is as follows:

Objective:

I am currently trying to construct a scale for assessing the SEVERITY of orthostatic tremor (OT) and its EFFECTS on patients with OT. Consequently, I would greatly appreciate help from people who suffer from OT.

Rationale:

The reasons for constructing a clinical rating scale for OT are that the scale could be used to:

  1. Document the severity of OT and its effect on the person with OT at clinic appointments, so that the doctor and patient with OT can be confident that a specific treatment is helping.
  2. Measure the severity of OT and its effects on the patient, so that new medicines can be tested for OT and the effects measured and ideally compared with other medicines.

Assess the Natural Evolution of OT in Each Patient:

Can you help? If from your experience with orthostatic tremor you have noticed ways in which you can tell it has got worse or better, even temporarily, please would you email or send a letter to Dr Peter Bain explaining what you have noticed. This information would be invaluable for constructing an OT Clinical Rating Scale which we would then test for reliability and validity. Examples: For example, you may have noticed that:

  1. You cannot stand still for so long when your OT is severe.
  2. Your legs get cramp when standing.
  3. Your hands might shake as well.

PLEASE send in your suggestions as every piece of information is in valuable for creating an OT clinical Rating Scale. Please write to or Email Dr Peter Bain at: Dr Peter Bain Department of Neurology Charing Cross Hospital London W6 8RF Email: p.bain@imperial.ac.uk Thank you for your help with this project. Yours faithfully, Dr Peter Bain MA MD FRCP Consultant Neurologist

8 Comments

  1. Carol Tarrier says:

    72 year old female. POT seems to be progressive with me. I was diagnosed over 12 years ago. It was not that problematic until a few years ago. Three years ago, I walk 6 miles & sit for a few minutes. I could jog a few miles. Today, I “furniture” walk steadying myself from chair to chair. I sit to cook. Sometimes if I stand for over one or two minutes, I freeze & lower myself to the floor. In the early stages, I enjoyed dancing. Now my Balance is compromised. Tremors are worst when I am anxious. I’m always comfortable sitting or Lying down. My address is P.O. Box 488, Pineland, FL 33945 USA if you have more questions. I hope that I have been somewhat helpful

  2. Lucy Baker says:

    i am more than willing to help with this. Do you have a questionnaire?
    I have noticed that the leg tremor is much worse in the mornings -having a shower is difficult.
    If I am nervous it is worse.
    My hands don’t shake.

  3. Mieke Vonk says:

    I ‘m Mieke, woman 65 years old suffering from OT since 6 years. I’m living in the Netherlands. If I can help please let me know!

  4. I think I have had OT for the last 20 years but it it only became a real problem about 15 years ago when I really had to sit down when not walking.About ten years ago, when I could not stand in the shower I sought help and eventually in 2006 was diagnosed with OT. Since then I have gradually deteriorated until now I have to use a wheelchair.When I ask my neurologist if there is any further treatment he says No! I am on Gabapentin 600mg tds. I would be grateful for any help as I love in RoI and as far as I know, there are only three of us diagnosed so far and nobody seems to care. Thank you for any help you can give me as I am not prepared to spend the rest of my life in a wheelchair.

  5. Ann Dodd says:

    Willing to help with OT research.

  6. Wendy Luba says:

    My early symptoms of OT started in the late 1980’s when I was under stress. Over the years, it gradually progressed, but it wasn’t until 2003 that it really became debilitating, and I was finally given a name for it. I now have both OT and ET and have seen many neurologists and movement specialists over the years, most of which have never seen another person with OT. I have had genetic testing and was found to have one copy of the MTHFR gene, and I find it interesting because I’ve become aware of other people with OT who also have it. I have also read that it is associated with ET. Just this year, I found out that I have one of the newly discovered Parkinsons susceptibility genes…. SIPA1L2, but I do not have Parkinsons. Over the last few years, I have had the symptoms of POTs, including a jump in norepinephrine of over 800 and am aware of others with OT who also have POTs. I question whether there is a connection with the two conditions and if OT just might be an autonomic problem. As I understand it, the autonomic nervous systems is the process by which involuntary actions of your organs, etc. are controlled, and where standing used to be an automatic function of my body, it no longer is. I have to grasp the floor with my toes, tighten my leg muscles and attempt to keep my balance. Where I used to be able to stand without even thinking about it, it has now become a major chore. Tremors are very dominant in my family. My mother had severe ET and Parkinsons in her later years, and all 3 of my siblings have some type of tremor. These are just a few of my observations that I thought might be of interest to you. I live in the US and am always willing to participate in research….in fact, I participate in a study at the NIH for Parkinsons Risk. I find it discouraging that there is so little research done on OT because it is so debilitating and life changing for many of us and some of the long-term affects of I’ve had is lot of leg and back pain, and even bone changes due to walking with an abnormal gait for many years. Then when you try to explain it to your doctors, they look at you like you’re crazy or a hypochondriac. Somehow, there needs to be more of an awareness made of OT because it’s tough enough to live with it, but then we have to live with the disbelief from friends, family and the medical system.

  7. Wendy says:

    Has this project been discontinued?
    I know that several people sent in the data requested, but there has been no answers to comments here and nothing published that I have seen.
    OT seems to be a forgotten disorder, although our QOL is poor at best.


© 2017 Tremor Action Network, all rights reserved.