The Orthostatic Tremor Forum (archive)

I am pleased to announce that Dr. Diego Torres-Russotto will be eventually working with our website in regards to a questionnaire that he is presently working on to clarify some of the issues regarding OT.

For those of you who are not familiar with him; you can view a presentation he made through our website under news etc. on the home page. Dr. Russotto is a Movement Disorder Neurologist and is presently is teaching/working at the Washington University School of Medicine in St. Louis, Missouri. I asked him if I could tell you about his background and this is what he said - He has been interested in Movement Disorders since graduating from Med School in 1999. He did a preliminary neurosurgery internship at Mayo Clinic in Rochester, then completed an internship in Internal Medicine, a residency in Neurology and a fellowship in Movement Disorders at Washington University in St. Louis.

I contacted him after I had viewed his video because you can see he is very interested in our disorder. We have maintained contact and after the meeting in Rochester I sent him a DVD. He knows Dr. Matsumoto from his time spent at the Mayo Clinic and was very interested and pleased that we had the meeting and get-together.

When he said that he would like to do a questionnaire I contacted Jeff from Admin and once he has it finished it will be on the website and then anyone wishing to participate can. You will be advised accordingly.

I did mention to Dr. Russotto that if there was anything we could do to help to let me know. I told him that we have over 250 people registered now but that unfortunately due to a website issue people are not asked to put their location down when they initially register. Dr. Russotto said that "their location would be useful knowledge to have in the event of future research announcements".

If people are comfortable listing this information they have to go back in and "edit" their original information. Jeff has provided instructions for this. Even if we know "what country" you live in it may be useful in the future.

Dr. Russotto did mention that he will be moving to Nebraska in January/2009 to continue his work on OT.

I thought this was pretty good news!

Peggy Whitta

Sounds good! Keep us posted!
Fran

Hi Peggy,

I am addressing this to you; but would be interested to hear if anyone else experiences these same problems.

I was pleased to read Dr. Torres-Russotto is working on a questionnaire for our OT websits. Since you have such a good relationship with him, do you think you could inquire if he would be interested in a question or two from those of us who have OT?

I have a question which I have asked of every neurologist I have seen and all either had no comment or said they didn't know. Perhaps you could pass this along to Dr. Torres-Russotto; I would be interested to know if he would add this to his questionnaire and if any of his OT patients have ever mentioned this to him.

My question is: Has anyone mentioned how the adrenal glands might figure into OT? For a little background, when I feel any sort of emotion, good, bad, happy, sad or stress; my adrenalin is out of control! It is maxed out. It is the same feeling I refer to as the FIGHT/FLIGHT SYNDROME. It would be the feeling one would have if a vehicle stopped quickly in front of you and you had to avoid an accident. The adrenalin rushes through your body, and afterwards you feel totally wiped out.
That is what I feel most of the time. It is exhausting!

Also, I think Mike mentioned this in Rochester; blood pressure dropping when one stands after sitting. This happens to me and has for so long I thought it was normal ~ it is not! Do any other OT friends experience this; and would this be a question Dr. Torres-Russotto would/could add to his questionnaire?

I would be interested to know if anyone else experiences this same problem.

Thanks for all your hard work, Peggy,

Betty

Hi Betty,

I experience both the severe adrenaline issues and the blood pressure drop when standing after sitting. In instances where there has been an emergency, ie. a near car crash, calling 911 when my father collapsed at a picnic, smelling smoke in my house, I have become completely disabled and unable to stand or walk slowly without assistance. The tremors are so noticeable that they cause alarm to others. When I sit down they disappear. The only positive thing about these episodes is that I was able to more easily demonstrate to my family what I feel (to a less severe extent ) every day of my life. My husband describes the adrenaline issue like this: my body should respond to an event or emotion or hunger or tiredness with a teaspoon of some chemical but instead dumps out a whole cup. I never had panic attack issues when I was younger. The adrenaline being out of control only became an issue in my life when the OT appeared (in my late thirties). I believe that OT and adrenaline are definitely connected and not separate co-existing conditions. This is, in my mind, a major cause of misdiagnosis or delayed diagnosis.

I agree that it would be helpful to both have this information in the questionnaire and for a neurologist to study the endocrine/tremor relationship.

Amy

Hi Amy,

I was pleased to read your response to my experiences. I feel, as you do, there may be a connection between the adrenal glands and OT; but this has not been checked out. Perhaps not many others have expressed this to their neurologist. I feel we ~ who have OT ~ often become so accustomed to our problems; we forget that is not the norm.

The way your husband expressed the adrenaline rush was interesting; I have always thought of it as I said above ~ I related it to a FIGHT/FLIGHT SYNDROME. Either way, it is a tremendous rush of adrenaline into our system and doesn't go away. It is very exhausting!

You mentioned panic attacks; I have not experienced what I would refer to as a panic attack. Mine are more of the adrenaline rush ~ which is with me almost all the time ~ and makes my tremors even worse.

I also agree perhaps an endocrine/tremor relationship should be brought into the study of OT.

This is what is so wonderful about this site; the more we write of what we experience, it may sometimes trigger others to think, I experience that too! This will be helpful to the neurologists who are studying OT. The more information we can give to them, the more they have to research.

Betty

I am going to let Dr. Torres-Russotto know that I announced about the questionnaire on the website and there have been a few replies that have some suggestions and questions and if he would like to view these first hand he can do so by accessing the website and forum.

Peggy

Thanks Peggy, we all appreciate your hard work and appreciate you keeping us informed as to what is happening.

Betty

Hi Betty,

I definitely experience an adrenaline rush, too. What I meant is that when I have decribed the feeling to several doctors, the first thing they think of is that you are having anxiety issues or a panic attack. I don't believe that is true. I've also read other posts that described the panic/anxiety diagnosis (or misdiagnosis as I would call it). My adrenaline problems can also be exhausting and definitely make my tremors worse.

I was persistent and found this web site so I was diagnosed in about two years. But for two years I can't tell you how many doctors told me I should try yoga or take some xanax because I was stressed out and that was the source of the shaky legs and adrenaline feeling. And when I asked, "if it's stress then why do the tremors stop when I sit down?" they never had an answer.

It is great to be able to talk to others who understand. And thank you so much, Peggy, for all of your efforts.

Amy

Hi! Everyone: You have a very interesting discussion going on about adrenaline over loads and I wanted to broaden the scope of it. Through the years there have been other OT people who in their histories, have made mention of feeling stress (good and bad) produced higher adrenaline levels than the norm. This ,of course, sent the wrong message to the TOO many doctors that are not familiar with OT resulting in an" anxiety diagnosis." We must remember that the stress produced by the OT event that we experience so many times a day is overwhelming. It is an unrelenting event that normal people do not have. We have an over- taxed system. Also, I mention on my 2007 Experience Page that my overall observation made after living with OT for 27 years that I have concerns about our abnormal stress response levels and our lack of normal defense or corrective reaction. I personally feel the nervous/endocrine message systems play a big part in our disorder.

Gloria