@louloutinkerbelle: always a variety... some times bad days and then there are 'worse' days. Just wanted to capture what I could. But you are right. Normally, doctors look at both the blood pressure change and the heart rate change from laying, to sitting, to standing. Need to look at bp and hr together, as well as position. LoLv.
I thought to be dysautonomia the pulse had to rise over 30 bpm on standing? Mine can go from 68 supine to 148 on standing and have had bp drops that are ridiculously low that I should be dead lol. I do hope you feel better as I know how bad this can make us all feel ♥
@galeontropa : After 13 months since my first vid, I look better & feel better. Still bump & bruise; still dizzy & almost fall; still nap every other day. But check out my newest vid & you can see that with time & good care, things can get better. I won't be doing jumping jacks any time soon, but I'm so grateful to be alive & better. Thanks goes to God and all the prayers. LoLv.
Ihave been sick for over year and a half with all kinds of symptoms. The doctors are finally going to test me for dysautonomia because everything else kept checking out ok. My blood pressure can bottom to around 70/50 and up to 150/90 with heart rate increase from 80 to sometimes 175. It does feel horrible! I hope they can find out what is wrong, but I am scared of a tilt table test. ):
@CubiasSlave : when is your TTTest scheduled? I did a vid on the TTT....if you check it out, please give me some feedback. If you already had your TTT by now, I hope you survived okay & don't have to have another one again! LoLv!
I was suffering through this with you and one of the reasons I could; is because I, too, suffer from the same symptoms. I performed my own test just yesterday and my results were very similar to yours with a remarkable difference in b/p readings and increase of pulse rate. I thank you for putting yourself through such agony to show those in the medical field that this IS an actual sickness and not one of psychological origin.
I remember how horrible I felt, and how the LAST thing I wanted to do was to put myself on video. But others have done it, too....and with my MD, and my expertise in anesthesiology and critical care...I knew I had to put it on YT. Thanks to those who did it before and after me...it is a good documentation of pathophysiology at work.
If you "YouTube" Search now, "d" "y" "s" now leads to:
"Dysautonomia", "Dysautonomiamd" and "Dysautonomia POTS"...if you keep typing, you also get familial dysautonomia. The computer must be keeping track! Our numbers are growing and/or something NEW has happened! Am I the only one who noticed? I just noticed it today. LOL to all, Dr M
Esp jsutter, thanks for bearing through this with me. You all know I am the kind of person who believes in what I am saying. As soon as the symptoms were atrocious, that was my first thought: "I have to go on YouTube so all my friends can see me there, just like them." I had to suffer this ordeal for the record, as a testimony, and as scientific verification that our bodies can not stand! Who would have thought?
I think that the 'low blood volume' aspect of dysautonomia is underestimated. Perhaps we all need to keep eating salt and drinking electryolye (like Gat....de) to keep UP our blood volume. Please don't do this if you have Congestive Heart Failure...otherwise, please ask you doctor first. LOL Margaret
I'm so sorry for everyone that can relate to this sickness. I hope it helps you to understand the 'correct' way to do orthostatics and some information to help you interpret your own numbers. I 'came back to life' after starting midodrine Rx, which constricts the blood vessels and gets more blood going to the brain...made a HUGE difference for me!
Doctors are trained to recognize hypovolemia, and to do so by 'testing' by taking orthostatics in first the lying, then the sitting, then the standing positions, respectfully. I agree: there is not enough recognition of the value of orthostatics. Highest Personal Regards, Dr M
The EKG rhythm has P wave (atrial contraction), QRS wave (ventricular contraction, and T waves (repolarization of the heart)...sounds like you had no arthymias like bigemeny, trigemeny, atrial fibrillation, or ventricular tachycardia. "Sinus tachycardia" is a normal polarization of the order that the heart contracts, and 144 is high. Upon standing, you and I can see OI exists. I just think its a matter of educating our medical students :-) Highest Personal Regards, Dr M
Hi Doc. Well I was thinking really after watching this, that our desperation often moves into confidence - once we get a diagnosis. I mean you now know (finally) why these things happen to you with Dysautonomia - so really it's like getting used to the enemy, and making them your friend (symptoms) - and having to accept them into your life. In other words, you learn to cope in ridiculous circumstances.
It's absurd a human cannot sit/stand up, yet this is the reality of a Dysautonomics life.
One would think, "HOW did we not get taught about this disease?" How many are suffering with the disease yet have no cure except the offer of psychiatric help (which I have and love) or psychological help (non-MD, unable to Rx). Here's to all out there that just got diagnosed, symptoms, and especially to those who are bedridden without a diagnosis. I believe the Diagnosis of POTS will increase and our children will not grow up with pediatric phyche issues that cause them to take their own lives.
Very good video - people need to see we fluctuate in abilty.
Supine to Erect, your pulse increase is 36 here. On my POTS video it's 62 increased(peak). So we share the same orthostatic intolerence. (Yours was no doubt wacking 130/140 initially too).
Sorry to see you are suffering so. I wonder quite what the problem with disbelieving doctors and 'reality' actually is - other than fear of being ignorant?
You're very brave and your efforts are worth your sacrfice. Well done. 5 stars.
It's the least I could do, since others have done it, too. I'm better today and getting lots of rest.
Brave? :-) Thank you. Some would say I am weird and stubborn, too. I always say that if the same thing happened to them, then they would take things even worse than me. I just have so much Fight in me. Thanks to God may you be blessed also. Fondly, Margaret
You're getting a narrowing of pulse pressure, with diastolic hypertension.....supine to erect.
The classic '40' gap e.g 120/80 has gone when you stand up. I get this exact problem too when extra sick.
To me watching this, that's the most obvious thing, that your heart is basically squeezing (contracting) in an attempt to stop you fainting as your blood is pooling.
POTS I think is dynamic attempt at anti syncope. If your pulse had shot up to 140, you'd probably have felt less ghastly.
Perhaps I have an 'athlete's heart'; I have been bradycardic, HR < 60 bpm. There must be a problem just as you say; also, when my heart does contract, the left ventricle has been shown (by echocardiogram) to 'flap' on itself, disrupting blood flow.
Anti-syncope. Nice word. Nice concept. You coined it, so tell us more about it...what your breathe of knowledge can lend us...Geez. It could be a title on a medical paper. Honestly, Dr M
Oh, I wish you did not have to apy such a price to show this. Dont do it again, there are already videos on you tube that demonstrate this!!!! Believe it or not the last neurologist I saw did not know (or just didn't care) how to perform this simple test and insisted that we start with me directly from the long trek to his office sitting then standing and lastly laying down! Cardiologist believes its not pots unless the pulse goes up more than 30 but he started from sitting as well. Take care
Sorry, as a doctor, I thought it was important to document the horror. That little "MD" at the end of my name? Consider it Given to the Cause...you guys are my Team, my inspiration, and such a reliable part of my life. Thanks, Dr M
I can so relate to this. Every position I change, left side to right side, lying down, sitting up, standing up, after 2 minutes, after 5 minutes....my regular BP is 90/50 if I am lucky if my heart rate is 30 sometimes, and when tacchy 175. Just FYI
This information is so important to document; please please keep documenting here, for all to see. We can learn every day. Please tell me, do you have POTS and something else? I just have to keep it all straight for the record. Appreciate your patience with such a silly question, but I just want to be complete; that wacky scientist in me wants to know....:-). LOL XX, Dr. Margaret
my wifes pots was caused by wheat allergy!!!
mikeer222 9 months ago
@mikeer222 : Wow! Never heard of that....thank you so much for sharing. Wow!
DysautonomiaMD 9 months ago
@louloutinkerbelle: always a variety... some times bad days and then there are 'worse' days. Just wanted to capture what I could. But you are right. Normally, doctors look at both the blood pressure change and the heart rate change from laying, to sitting, to standing. Need to look at bp and hr together, as well as position. LoLv.
DysautonomiaMD 1 year ago
I thought to be dysautonomia the pulse had to rise over 30 bpm on standing? Mine can go from 68 supine to 148 on standing and have had bp drops that are ridiculously low that I should be dead lol. I do hope you feel better as I know how bad this can make us all feel ♥
louloutinkerbelle 1 year ago
thanks for your video. I hope you feel better now.
galeontropa 1 year ago
@galeontropa : After 13 months since my first vid, I look better & feel better. Still bump & bruise; still dizzy & almost fall; still nap every other day. But check out my newest vid & you can see that with time & good care, things can get better. I won't be doing jumping jacks any time soon, but I'm so grateful to be alive & better. Thanks goes to God and all the prayers. LoLv.
DysautonomiaMD 1 year ago
Ihave been sick for over year and a half with all kinds of symptoms. The doctors are finally going to test me for dysautonomia because everything else kept checking out ok. My blood pressure can bottom to around 70/50 and up to 150/90 with heart rate increase from 80 to sometimes 175. It does feel horrible! I hope they can find out what is wrong, but I am scared of a tilt table test. ):
CubiasSlave 1 year ago
@CubiasSlave : when is your TTTest scheduled? I did a vid on the TTT....if you check it out, please give me some feedback. If you already had your TTT by now, I hope you survived okay & don't have to have another one again! LoLv!
DysautonomiaMD 1 year ago
My friend Margaret,
I was suffering through this with you and one of the reasons I could; is because I, too, suffer from the same symptoms. I performed my own test just yesterday and my results were very similar to yours with a remarkable difference in b/p readings and increase of pulse rate. I thank you for putting yourself through such agony to show those in the medical field that this IS an actual sickness and not one of psychological origin.
Your Brother In Christ,
Jeff
jd450lh 2 years ago 2
I remember how horrible I felt, and how the LAST thing I wanted to do was to put myself on video. But others have done it, too....and with my MD, and my expertise in anesthesiology and critical care...I knew I had to put it on YT. Thanks to those who did it before and after me...it is a good documentation of pathophysiology at work.
Best Wishes to You,
Margaret
DysautonomiaMD 2 years ago
If you "YouTube" Search now, "d" "y" "s" now leads to:
"Dysautonomia", "Dysautonomiamd" and "Dysautonomia POTS"...if you keep typing, you also get familial dysautonomia. The computer must be keeping track! Our numbers are growing and/or something NEW has happened! Am I the only one who noticed? I just noticed it today. LOL to all, Dr M
DysautonomiaMD 2 years ago
Esp jsutter, thanks for bearing through this with me. You all know I am the kind of person who believes in what I am saying. As soon as the symptoms were atrocious, that was my first thought: "I have to go on YouTube so all my friends can see me there, just like them." I had to suffer this ordeal for the record, as a testimony, and as scientific verification that our bodies can not stand! Who would have thought?
DysautonomiaMD 2 years ago
I think that the 'low blood volume' aspect of dysautonomia is underestimated. Perhaps we all need to keep eating salt and drinking electryolye (like Gat....de) to keep UP our blood volume. Please don't do this if you have Congestive Heart Failure...otherwise, please ask you doctor first. LOL Margaret
DysautonomiaMD 2 years ago
I'm so sorry for everyone that can relate to this sickness. I hope it helps you to understand the 'correct' way to do orthostatics and some information to help you interpret your own numbers. I 'came back to life' after starting midodrine Rx, which constricts the blood vessels and gets more blood going to the brain...made a HUGE difference for me!
DysautonomiaMD 2 years ago
Doctors are trained to recognize hypovolemia, and to do so by 'testing' by taking orthostatics in first the lying, then the sitting, then the standing positions, respectfully. I agree: there is not enough recognition of the value of orthostatics. Highest Personal Regards, Dr M
DysautonomiaMD 2 years ago
The EKG rhythm has P wave (atrial contraction), QRS wave (ventricular contraction, and T waves (repolarization of the heart)...sounds like you had no arthymias like bigemeny, trigemeny, atrial fibrillation, or ventricular tachycardia. "Sinus tachycardia" is a normal polarization of the order that the heart contracts, and 144 is high. Upon standing, you and I can see OI exists. I just think its a matter of educating our medical students :-) Highest Personal Regards, Dr M
DysautonomiaMD 2 years ago
Hi Doc. Well I was thinking really after watching this, that our desperation often moves into confidence - once we get a diagnosis. I mean you now know (finally) why these things happen to you with Dysautonomia - so really it's like getting used to the enemy, and making them your friend (symptoms) - and having to accept them into your life. In other words, you learn to cope in ridiculous circumstances.
It's absurd a human cannot sit/stand up, yet this is the reality of a Dysautonomics life.
luminescentfeeling 2 years ago 23
One would think, "HOW did we not get taught about this disease?" How many are suffering with the disease yet have no cure except the offer of psychiatric help (which I have and love) or psychological help (non-MD, unable to Rx). Here's to all out there that just got diagnosed, symptoms, and especially to those who are bedridden without a diagnosis. I believe the Diagnosis of POTS will increase and our children will not grow up with pediatric phyche issues that cause them to take their own lives.
DysautonomiaMD 2 years ago
Very good video - people need to see we fluctuate in abilty.
Supine to Erect, your pulse increase is 36 here. On my POTS video it's 62 increased(peak). So we share the same orthostatic intolerence. (Yours was no doubt wacking 130/140 initially too).
Sorry to see you are suffering so. I wonder quite what the problem with disbelieving doctors and 'reality' actually is - other than fear of being ignorant?
You're very brave and your efforts are worth your sacrfice. Well done. 5 stars.
luminescentfeeling 2 years ago 12
It's the least I could do, since others have done it, too. I'm better today and getting lots of rest.
Brave? :-) Thank you. Some would say I am weird and stubborn, too. I always say that if the same thing happened to them, then they would take things even worse than me. I just have so much Fight in me. Thanks to God may you be blessed also. Fondly, Margaret
DysautonomiaMD 2 years ago
You're getting a narrowing of pulse pressure, with diastolic hypertension.....supine to erect.
The classic '40' gap e.g 120/80 has gone when you stand up. I get this exact problem too when extra sick.
To me watching this, that's the most obvious thing, that your heart is basically squeezing (contracting) in an attempt to stop you fainting as your blood is pooling.
POTS I think is dynamic attempt at anti syncope. If your pulse had shot up to 140, you'd probably have felt less ghastly.
luminescentfeeling 2 years ago 12
Perhaps I have an 'athlete's heart'; I have been bradycardic, HR < 60 bpm. There must be a problem just as you say; also, when my heart does contract, the left ventricle has been shown (by echocardiogram) to 'flap' on itself, disrupting blood flow.
Anti-syncope. Nice word. Nice concept. You coined it, so tell us more about it...what your breathe of knowledge can lend us...Geez. It could be a title on a medical paper. Honestly, Dr M
DysautonomiaMD 2 years ago
Comment removed
luminescentfeeling 2 years ago
Oh, I wish you did not have to apy such a price to show this. Dont do it again, there are already videos on you tube that demonstrate this!!!! Believe it or not the last neurologist I saw did not know (or just didn't care) how to perform this simple test and insisted that we start with me directly from the long trek to his office sitting then standing and lastly laying down! Cardiologist believes its not pots unless the pulse goes up more than 30 but he started from sitting as well. Take care
lednugenna 2 years ago 6
Sorry, as a doctor, I thought it was important to document the horror. That little "MD" at the end of my name? Consider it Given to the Cause...you guys are my Team, my inspiration, and such a reliable part of my life. Thanks, Dr M
DysautonomiaMD 2 years ago
I can so relate to this. Every position I change, left side to right side, lying down, sitting up, standing up, after 2 minutes, after 5 minutes....my regular BP is 90/50 if I am lucky if my heart rate is 30 sometimes, and when tacchy 175. Just FYI
SamiBebe2 2 years ago 6
This information is so important to document; please please keep documenting here, for all to see. We can learn every day. Please tell me, do you have POTS and something else? I just have to keep it all straight for the record. Appreciate your patience with such a silly question, but I just want to be complete; that wacky scientist in me wants to know....:-). LOL XX, Dr. Margaret
DysautonomiaMD 2 years ago
I hope you all know how much I love and look forward to helping the Cause. Off to bed.....thank you. Dr M
DysautonomiaMD 2 years ago