How is everyone?

[Lorie M]

Has anyone seen the group of people on Facebook? The are under "Primary Orthostatic Tremor".
The group is getting bigger as time passes. Lots of interesting posts too. Much like this one where people tell us how they are doing. Check it out if you can! The more the merrier eh?
Lorie M

[lla]

Hello to everyone,

First I would like to tell everyone how much this site has helped and inspired me. I have been suffering for a long time with this condition and not doing a very good job of accepting what is. I believe now I am able to say I am ready to live and enjoy life. Not the easy life I once had, but the life I have now. It is still a wonderful life and I don't want to miss out on anymore of it.

My question concerns the diagnosis of what we have. I have been reading about POTS. I do have many of the symptoms and my blood pressure rises immediately, when going from sitting to standing at the doctors office. I want to know if Orthostatic Tremors and POTS are the same thing?

Thank you, so much, for your interest and caring.

Linda

[admin]

Hi Linda

You have probably done a bit of research, but I thought I post a couple more links for the discussion.

The unique feature of Primary Orthostatic Tremor (POT) is the fine tremor:

the diagnosis of OT should be suspected in any patient describing unpleasant sensations shortly after standing that is relieved by sitting or walking. Auscultation of the gastrocnemius muscles can sometimes reveal a characteristic of barely audible noise akin to the sound of a helicopter. The diagnosis is confirmed by pathognomonic surface EMG recordings revealing rhythmic activation of lower limb muscles at sharply peaked frequencies between 14 and 18 Hz, and sometimes higher

LINK

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Postural Tachycardia Syndrome (POTS) -

Postural orthostatic tachycardia syndrome (POTS) is one of a group of disorders that have orthostatic intolerance (OI) as their primary symptom. OI describes a condition in which an excessively reduced volume of blood returns to the heart after an individual stands up from a lying down position. The primary symptom of OI is lightheadedness or fainting. In POTS, the lightheadedness or fainting is also accompanied by a rapid increase in heartbeat of more than 30 beats per minute, or a heart rate that exceeds 120 beats per minute, within 10 minutes of rising. The faintness or lightheadedness of POTS are relieved by lying down again.....

LINK

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It is still a wonderful life and I don't want to miss out on anymore of it.

agreed !

I read a quote earlier this week and it has stuck with me ..well, at least for a whole week

The art of living is the art of getting back up.

[lla]

Thank you, very much, for your quick reply and the links for additional information. I read every site I can find about OT.

I also love the quote. My just surviving has not been enough.

Thank you,
Linda

[gloria]

Hello Linda & All:
In time we all need to adjust and evaluate with a realistic view of our lives with OT. We formulate new suitable ways of daily coping. Being inventive is a must in shaping the type of lives we lived before OT with new doable changes and approaches. We learn to avoid, substitute and educate !

Linda you have a great attitude, keep us posted !

Gloria

[gloria]

Holidays are coming… good times but a little stress too?

Relaxation/Breathing techniques: exercises from Harvard Medical School. 4 different "mini-relaxations" that take less than 5 minutes.

http://hvrd.me/1a01UCd

[MaureenB]

Ever so pleased to hear you are so much better Mike, I think we all missed your happy banter,
MaureenB

[snickers]

So things have been interesting ,to say the least!
After almost 2 years retired, i decided to go back to work for a few days a month.(4-6)
I am a home care nurse and had an experience the first week of returning that shocked and frightened me.
I was standing beside a stretcher, preparing to do a dressing change , I was slightly anxious,
As I was standing do the procedure,my legs started to shake, uncontrollably, i couldn't move my feet ,to be able to move to the wall for support, my feet were like blocks of lead and I felt glued to the floor.and afraid I would fall at the same time.
I began to perspire with sweat rolling of my face, never has this tremor been so profound .My whole body(torso) started to tremor....the patient was worried about ME for goodness sake !and I was so embarrassed. So, I do think adrenaline must play a role in this condition.
I am awaiting an appointment with a neurologist, but as it is non-urgent, that will take 10-12 months.
As someone said on here, it is an inconvenience,.I likely will be unable to continue working,because my job requires standing...but that is OK b/c I have a pension...I am retired already!!
I do notice that when I am tired, stressed, the tremor is much more pronounced, and it is certainly getting worse than even a year ago.
I also gave up meat,dairy,fat,fish and processed foods a year and a half ago...and don't think the change in the way of eating has positively affected the tremor...i weigh 70 lbs less ,so there is less of me to shake.!!!
My husband has a familial tremor so we are quite the pair!!!
Any way...just wanted to share that experience with all.

~sv~

[patty]

Hello there, it's so lovely with most of the posts on here that no matter what awful events happen to us with OT we all seem to manage to smile and carry on even though it's a horrible condition to have.

I have been retired for nearly eight years now but clearly remember being on front desk as a receptionist at my local GP surgery. It was first thing in the morning and very manic, even though I had the counter to lean on I started shaking, and so it escalated and escalated until I had to move away or rather shuffle away and sit down in the "loo" of all places, at that time I didn't know what was wrong with me and thought it was just nerves, it was some considerable years later before I found out what the cause actually was.

Stress is definately a major factor in our condition and therefore occasionally take half a tablet of clonazepam to help calm me down in certain situations, but even they sometimes do not work, that in itself is another mystery as to why they sometimes work and sometimes don't, it would be lovely to be "normal" again but feel that is never going to happen so keep smiling everyone and enjoy life, as my GP recently said when I presented at the surgery with yet another age related complaint, I said jokingly, its good this old age isn't it, he replied it's better than the alternative!!!

[snickers]

Just got a call from the neurologist office...they have a cancellation....on my way this morning!!!!...9 months early works for me!!!!

~sv~

[admin]

Best of luck today with your appointment!

[Lorie M]

Good luck at the neurologist!
Lorie M

[snickers]

so......because there is nothing in the newest movement disorders quarterly about orthostatic tremor,(!!!????)(,a glossy gold neurlogist magazine) :
the diagnosis is a "variant of an essential tremor" "EMG's would not prove anything"....
So..for me there is nothing more to do at this point...I think it would be different if I was 2 or 3 decades younger,or, there was a treatment, or I was willing to take meds(which I am not...the meds only fix the symptoms and are not a cure..... so I shall soldier on, find ways of adapting, as I have done and buy a cane chair!...I
(And still continue to visit this website!!!


~sv~

[gloria]

Snickers: WOW! Hard to believe at this point in time there are still a few "calling us a "variant of essential tremor" . When standing generally an EMG will show the sharp peak Hz identifing OT that no other condition produces. Unfortunately your description of what happened to you along side the stretcher is the extreme episode of what happens to us when we have stood too long. I still remember back before I was diagnosed often I would be caught feeling those symptoms going to it's extreme like you. And yes our adrenalin being another message system has to put it's "two cents in" !! For most of us this will still happen of course if we can not find a place to sit or start walking to avoid the freezing of our legs and the prespiration on our forehead. Learning the timing of the OT experience is a way of controlling OT as we go thru the day. Sorry you had a bad day at the Doc's, but remember your OT community is here to listen .......Gloria

[admin]