The Orthostatic Tremor Forum (archive)

Hi! Laurie Frasher: When I read the e-mail you sent to me I replied with the advise that you register on the website to help you understand about OT and to show you that you are not alone with this disorder. I'm pleased that you did and I hope that you will ask your husband and family to read it too so they will recognize what you are living with and with that understanding they will be able to help you find ways of coping. It is a challenge for all of us but by fighting back and learning ways to adjust will give you renewed strength and control with new ways of doing things. Gloria

Bonsoir,
Je m'appelle Marie et je suis française. (j'espère que vous pourrez traduire cette présentation grâce à votre ordinateur car mes connaissances dans votre langue ne sont pas suffisantes pour que je puisse rédiger en anglais !!)
J'ai 67 ans, suis mariée, ai 3 enfants et 6 petits-enfants.
J'ai ressenti les premiers symptômes du TOP aux environs de l'an 2000 : je me suis rendu compte que je ne pouvais plus tenir immobile les pieds joints et que si je n' écartais pas les jambes, je vacillais..... Mais çà ne me gênait pas et ce n'est qu'en 2003 que j'en ai parlé à mon médecin généraliste.
Celui-ci m'a immédiatement dirigée vers un neurologue...... et il a fallu que j'en consulte 3 avant de savoir ce dont je souffrais (les deux premiers attribuaient cette situation au stress et à l'anxiété). Le 2ème m'a quand même prescrit du clonazépam à petite dose (amélioration nette).
Mais je ne savais toujours pas ce que j'avais, et petit à petit, je me suis rendu compte que j'augmentais les doses pour avoir un effet bénéfique.
J'ai pris peur et ai consulté le 3ème neurologue qui a immédiatement vu le TOP et m'a prescrit un EMG. Le résultat était d'un tremblement à 17 hz. Quel soulagement de savoir enfin ce dont je souffrais !!
En faisant des recherches sur internet, j'ai appris qu'il existait des neurologues spécialistes des tremblements anormaux et j'en ai consulté un en milieu hospitalier. Je suis suivie chaque année par lui et il a ajouté des comprimés de Prégabaline, qui associés aux gouttes de clonazépam, me conviennent parfaitement bien.
Il y a évidemment beaucoup de choses que je ne peux plus faire : passer l'aspirateur ou laver le sol, nettoyer les vitres, marcher dans la foule ou dans les files d'attente, rester immobile pour discuter avec quelqu'un.
La vie est vraiment changé par cette maladie, mais je positive en me disant qu'il y a pire !!
Je suis impliquée dans un groupe de personnes atteintes de TOP et nous discutons souvent entre nous par le net et c'est d'un grand réconfort.
Voilà..... Vous en savez un peu plus sur moi et j'espère que nous pourrons avoir des échanges par ce forum et surtout être informée de ce qui pourrait être découvert sur le TOP ou sur ses traitements. Si certains d'entre vous ont des astuces pour mieux vivre..... je suis preneur
Bien amicalement et merci à Gloria de m'avoir acceptée au sein de votre communauté.

Bienvenue Marie, Cristel and Katia!

Je suis désolé, je ne parle pas français. Merci de vous joindre au forum!

Marie, Cristel and Katia are members of a French Facebook TOP group - TOP/POT (Tremblement Orthostatique Primaire / Primary Orthostatic Tremor). If you speak french you can locate their Facebook page by searching FB for "Tremblement Orthostatique Primaire". I know that everyone is very happy that you have joined the forum. Translation is currently available for the main part of this OT website, but the forum requires your computer to translate the posts. I will look into other methods of translating the forum posts. It would be very helpful to be able to share information across all borders and languages.

best regards,

Jeff

Ce qui suit est le poste de Marie traduit par " Google Translate "
The following is Marie's post translated with "google translate"

Good Evening, My name is Marie and I'm French. (I hope you can translate this presentation through your computer because my knowledge of your language are not sufficient for me to write in English !!
I am 67 years old, am married, have 3 children and 6 grandchildren.
I felt the first symptoms of TOP around 2000: I realized that I could not stand still with feet together and if I do not spread my legs, I shake ..... but it did not bother me until 2003 when I spoke to my GP.
It was immediately referred to a neurologist ...... and it took 3 neurologists before I knew what I suffered from (the first two attributed this to stress and anxiety). The second I still prescribed in small doses of clonazepam (marked improvement).
But I still do not know what I had, and little by little, I realized that I increased the dose to have a beneficial effect.
I was afraid and went on the third neurologist who immediately saw the tremor and prescribed me an EMG. The result was a tremor frequency at 17 hz. What a relief to finally know what I suffered !!
In doing research on the internet, I learned that there were neurologists of abnormal tremors and I visited a hospital. I have had appointments every year and he has added tablets of Pregabalin, which drops associated with clonazepam, suit me perfectly.

Obviously there are many things I can not do: vacuum or mop the floor, clean the windows, walking in the crowd or queues, stand still to talk to someone. Life is really changed by this disease, but I positive, saying that there is worse !!
I am involved in a group of people with TOP and we often talk us through the net and it is a great comfort.
Here ..... You know a little more about me and I hope we can have exchanges with this forum and especially be aware of what might be found on the TOP or treatments. If any of you have tips for a better life ..... I'm interested:

Best wishes and thank you to Gloria for accepting me into your community.

Jeff,
Thank you for this translation !!

Marie47

Hello Marie47: Thank you for posting on the Forum your experiences with OT, finding a diagnosis and the medications you are trialing. Nothing new in the way of medications but sharing coping skills you find helpful are always good to hear about. Look forward to your postings in the future, Gloria

Translation has been added to the forum. In the upper left of the page, above the logo. Click and choose your preferred language to translate the page. This software translation supports 80 different languages.

** this is a software/computer translation, there will be errors






Using translation on a cellphone or similar mobile device -

A mobile device (cellphone) often uses a different layout that is customized for small screens. To use the translation utility, you would need to switch to the full size layout by clicking on "Switch to full style"... see image below:

I've just been diagnosed with Essential Tremor. It's worst in my hands at present, though in fact the tremor is all over at times but not too bad. I get it badly when I am standing still, mainly outside after walking a few steps (I seem to be ok mostly indoors). Thing is, I have POTS - postural orthostatic tachycardia syndrome so standing still is a real problem anyway, and the tremor is new and I just thought it was the POTS getting worse, but now I think I should have told the doctor and maybe I have orthostatic tremor as well.

NEWS!

OT Information Day - November 29th! Nedlands, Western Australia

Dr Julian Rodrigues, Mr Tony Petta - Physiotherapist, a Pharmacist with the Neurology Ward at SCGH, and Dr Sue Boyd will discuss her experience living with OT and her recent involvement with the OT research at the UNMC in the USA.

To learn more about this upcoming meeting and discuss the event please click on this link - http://bit.ly/2014_AustraliaOTinfoDay

Hi Gloria,

I was diagnosed with peripheral neuropathy in 2006, but could not get any answers re what I believed to be a problem with my legs. My OT was diagnosed five years ago and I was put on Lyrica 150mg twice a day. Lyrica does help contain the tremor but in the last twelve months the neuropathy has become worse and pain in the legs and lower back has meant an end to my golfing days. I find that exercise (the gym variety) only makes matters worse, walking is out of the question because of my lack of balance. I have been told that I just have to grow old gracefully but I have put that in the "not yet" basket. Great to read the thoughts and experiences of others. Nice to know that I am not alone.

Hello Vallis: Thanks for introducing yourself on the Forum. I know how you feel about giving up your golf, still have my golf clubs and other gear in my basement, why I don't know! Most OT people have reported regular gym type excercise does not work for them either. Perhaps a physical therapist might be better and your neurologist could write a note as to what your needs are. Thank you for posting your location when you registered. Since you are from Australia did you read the post before yours on this page about a meeting there and can click on the link for info. It might be a long distance from your home but it is well worth the trip to attend an OT meeting. Just meeting with other OT people chases our feeling of OT loneliness away. Gloria

Hi, I was looking online a few months ago to try to diagnose myself. My diagnosis was confirmed last month. I don't have the feeling/fear of falling. My main symptom is shaking as soon as I stand. The longer I stand, the more I shake. I need to sit. It is tiring & frustrating. My heart also beats hard and faster than normal at times (every day). My tremor was timed at 15 hz. I used to have episodes occasionally for many years but this year it grew to all the time. There is never a time now that I don't shake when standing.
Reading about this condition, it describes it as the fear of falling, which I don't have, so I'm wondering if this is actually what I have.
I was wondering if others had the absence of the fear of falling. Maybe that will come later.
Thank you for those who contribute to this forum.
Carrie

Hi Carrie, Welcome to the forum, I have had OT for 20+ yrs. but was only diagnosed in 08, I did not have the fear of falling early on, but now I fell I will fall if I do not sit when the shaking is going on, but have never fallen once. Do you take any medication yet? It does take the edge off, but some people do not take anything. I have the racing heart & overheating & perspiring if I overdo things, which I tend to do. Seems to be part of the symptoms for many of us.
Good luck with your journey, I like to put OT in the background in its box, & carry on the best I can, there is so much good information here.
Take Care
Shirley

Carrie,Shirley & All OT friends: I do not feel the sense of falling when overstanding, I just feel the need to sit. Some OT people describe a sense of falling. OT situations can be very stressful and I find overstanding too long brings on heat and a perspiring forhead as well. I have learned to carry a cane/chair with me when I go out to avoid the stressfull event of standing. I'm always looking for ways of fighting back at OT. Thanks for sharing and look forward to hearing more of your thoughts, Gloria

Hi, my name is Rena from sunny Jacksonville, FL. I'm 40 and was just diagnosed with OT. I have been unable to stand, walk or use fine motor skills very well for a few years, mingled with many misdiagnosis. My legs and arms spasm like crazy. My new doc identified what it was and put me on Primidone and I was a new person within hours. Still figuring out what this is, but so happy to have control of myself again.

Hello Rena: Always good to hear encouraging news that Primidome is helping you . Question..... did your doctor give you an EMG to determine your OT diagnosis? Happy to have you as a new member on the Forum and look forward to continuing postings on how you are doing or questions for your OT friends.. Gloria