funkyqueen
Senior Member
- Messages
- 123
- Location
- South of France
Hi there !
To make it very short, I'm in a poor and pathetic state ATM. I do not know why, but my " " healt "" worsen a lot, recently.
I called 12 times Emergencies , those 7 last weeks, for several states of severes brain hypo-perfusion/ with pré-syncope imminent feelings, state of imminent pre-syncope feeling which stay for hours, and not relieved after several hours of lying down/ legs elevated position ??...but a relieve after 50 min of O² Therapy ( so i was able to begging only after O², what was saying me the regulator-doctors at emergencies.
I felt those ischemic episode, like ,mini " " Transcient Ischemic Accidents." and differenciate from my 6 TIA's i done the 3 lasts years.
I stay in hospital for 6 days, but just 2 test was done ...and guess what ? no help. The worst was when i was in constant pré-syncope state + constant hypoperfusion , for more than consecutives hours. At the stage, i was totally unable to keep even the sitting position, for just any minutes, so impossible to eat for 3 consecutives days and nights
I have an appointmet, tomorrow, with a multi published Neuro-vascular Professor, and, to make it short as possible, I consider this appointment as one last chance .. I feel at the end of what is bearable.
I would love your help, your opinions on the interpretation of my "
( Understanding my poor man's tilt table test + my 24:00 BP/pulse recordings" )
As i have so poor cognitive ( poor blood brain flow, in reality ) It take me 3 days to wrote you this),
***********************************
My poor Man's tilt table test
(i passed the exact test by Dr. David Bell)
*Test +0 : - after 10 min lying down : 167/106 pulse 73 - notes from nurse and/ or patient : feeling of swarming in the feet, feeling feet cold, pale skin of feet
*Test+5 min lying down : 158/99 pulse 77 - notes from nurse/patient : No sensation, feel less cold, yawn
*T+ 10 min lying down : 164/107 pulse 78 - notes from nurse/patient : No sensations.
*Begining of Test In standing position (time + 0 ) : 166/126 pulse 95 - notes from nurse/patient : she is swaying, dizziness sensations , feel her feet soo cold so it hurt ++( nurse : and its true, i touch them) , small pigment discoloration on the thighs and forearms
*T+3 min standing : 214/112 pulse 92 - notes from nurse/patient : Important feeling of imminent urination
*T+ 6 min Standing : 167/106 pulse 97 - notes from nurse/patient : More important feeling of imminent urination , rocking/ swaying of the trunk less, discoloration on the forearm, ( = sevral whites dots, like a girafe skin )
*T+ 9 min Standing : 157/101 pulse 89 - notes from nurse/patient : rocking/ swaying of the trunk , she is saying she feel extreme brain fog
*T+12 min Standing : 148/115 pulse 89 - notes from nurse/patient : rocking/ swaying of the trunk, tingling on left side
* T+15 min Standing : 169/104 pulse 86 - notes from nurse/ patient : rocking/ swaying of the trunk , muscular left thigh pain
* T+18 min Standing : 152/100 pulse 95 - notes from nurse/ patient :rocking/ swaying of the trunk , cold sensation until in the thighs, feeling left facial paresthesia
* T+ 21min Standing : 150/111 pulse 86 - notes from nurse/ patient : rocking/ swaying of the trunk, sensation of muscle pain in left thigh & buttock, convergence ocular sensation, difficulty with brightness
* T+24 min Standing : 152/109 pulse 86 - notes from nurse / patient : rocking/ swaying of the trunk, close her eyes , sleep feeling, yawns
*T+ 27 min Standing : 165/109 pulse 95- notes from nurse / patient : fatigue, rocking/ swaying of the trunk , largest odorous sweating sensation
* End of test at +30 min : 163/107 pulse 89 - notes from nurse/ patient : rocking/ swaying of the trunk, slight paresthesia of the left side of the face
From what I understand :
- Confirmed diastolic dysfunction (already found by cardiologist last year, but no any treatment proposed)
- But more than that, severe orthostatic intolerance, Which expresses by Diastolic Hypertension, it-self due to a blood volume depletion:
- Not sure this poor man tilt test show or not another form of OI : P.O.T.S( but, Dr Kaufman and Dr Hyde gave me both a POTS diagnosis, with undectable A.D.H level
What do you think about that, Guys ?
**************************
My 24:00 hours recordings on blood pressure/ pulse pressure/ pulse :
Please, look at the picture
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From i understand, about this :
- a ( re-re-re confirmation of my severe Diastolic Hypertension ( Dr Bell reports " several measurement of diastolic hypertension, wich is a dysautonomia, so poor brain blood flow, like in others cases of O.I.
- P.O.TS probably, as my pulse increased + 34 bpm after min standing, and + 24 min " only", after 18 min standing ( but ! Measure was at +9 min )
- tachycardia at resting
- Each times i'm standing, or even sitting, my pulse pressure decreased under 40, wich is, according to Dr Bell/Dr Streeteen, impossible to have a sufficient and correct cerebral blood flow...
And on 61 measurements, i had 19 under 40, even with for only activity of the day : standing 30 + 18 min, lying down / legs up, the great majority of the time, and with only " exercise", push my-self or with help in my wheel chair : so , just surviving that way, i'm in hypo-perfusion for 31.14 % of the time
- i take 60 Mg of Artificial A.D.H ( Desmopressine), and a daily antiplatel agent, and have 1 to 3 infusions of saline per week, tring to add me blood volume...Even with that, nothing to do...
- for my strange nocturne hypotension, i do not know what to think about that for the moment
Thanking you warmelly in adance for your time & attention! And i hope some advices (impossible to think, even a little by my self )
To make it very short, I'm in a poor and pathetic state ATM. I do not know why, but my " " healt "" worsen a lot, recently.
I called 12 times Emergencies , those 7 last weeks, for several states of severes brain hypo-perfusion/ with pré-syncope imminent feelings, state of imminent pre-syncope feeling which stay for hours, and not relieved after several hours of lying down/ legs elevated position ??...but a relieve after 50 min of O² Therapy ( so i was able to begging only after O², what was saying me the regulator-doctors at emergencies.
I felt those ischemic episode, like ,mini " " Transcient Ischemic Accidents." and differenciate from my 6 TIA's i done the 3 lasts years.
I stay in hospital for 6 days, but just 2 test was done ...and guess what ? no help. The worst was when i was in constant pré-syncope state + constant hypoperfusion , for more than consecutives hours. At the stage, i was totally unable to keep even the sitting position, for just any minutes, so impossible to eat for 3 consecutives days and nights
I have an appointmet, tomorrow, with a multi published Neuro-vascular Professor, and, to make it short as possible, I consider this appointment as one last chance .. I feel at the end of what is bearable.
I would love your help, your opinions on the interpretation of my "
( Understanding my poor man's tilt table test + my 24:00 BP/pulse recordings" )
As i have so poor cognitive ( poor blood brain flow, in reality ) It take me 3 days to wrote you this),
***********************************
My poor Man's tilt table test
(i passed the exact test by Dr. David Bell)
*Test +0 : - after 10 min lying down : 167/106 pulse 73 - notes from nurse and/ or patient : feeling of swarming in the feet, feeling feet cold, pale skin of feet
*Test+5 min lying down : 158/99 pulse 77 - notes from nurse/patient : No sensation, feel less cold, yawn
*T+ 10 min lying down : 164/107 pulse 78 - notes from nurse/patient : No sensations.
*Begining of Test In standing position (time + 0 ) : 166/126 pulse 95 - notes from nurse/patient : she is swaying, dizziness sensations , feel her feet soo cold so it hurt ++( nurse : and its true, i touch them) , small pigment discoloration on the thighs and forearms
*T+3 min standing : 214/112 pulse 92 - notes from nurse/patient : Important feeling of imminent urination
*T+ 6 min Standing : 167/106 pulse 97 - notes from nurse/patient : More important feeling of imminent urination , rocking/ swaying of the trunk less, discoloration on the forearm, ( = sevral whites dots, like a girafe skin )
*T+ 9 min Standing : 157/101 pulse 89 - notes from nurse/patient : rocking/ swaying of the trunk , she is saying she feel extreme brain fog
*T+12 min Standing : 148/115 pulse 89 - notes from nurse/patient : rocking/ swaying of the trunk, tingling on left side
* T+15 min Standing : 169/104 pulse 86 - notes from nurse/ patient : rocking/ swaying of the trunk , muscular left thigh pain
* T+18 min Standing : 152/100 pulse 95 - notes from nurse/ patient :rocking/ swaying of the trunk , cold sensation until in the thighs, feeling left facial paresthesia
* T+ 21min Standing : 150/111 pulse 86 - notes from nurse/ patient : rocking/ swaying of the trunk, sensation of muscle pain in left thigh & buttock, convergence ocular sensation, difficulty with brightness
* T+24 min Standing : 152/109 pulse 86 - notes from nurse / patient : rocking/ swaying of the trunk, close her eyes , sleep feeling, yawns
*T+ 27 min Standing : 165/109 pulse 95- notes from nurse / patient : fatigue, rocking/ swaying of the trunk , largest odorous sweating sensation
* End of test at +30 min : 163/107 pulse 89 - notes from nurse/ patient : rocking/ swaying of the trunk, slight paresthesia of the left side of the face
From what I understand :
- Confirmed diastolic dysfunction (already found by cardiologist last year, but no any treatment proposed)
- But more than that, severe orthostatic intolerance, Which expresses by Diastolic Hypertension, it-self due to a blood volume depletion:
- Not sure this poor man tilt test show or not another form of OI : P.O.T.S( but, Dr Kaufman and Dr Hyde gave me both a POTS diagnosis, with undectable A.D.H level
What do you think about that, Guys ?
**************************
My 24:00 hours recordings on blood pressure/ pulse pressure/ pulse :
Please, look at the picture
From i understand, about this :
- a ( re-re-re confirmation of my severe Diastolic Hypertension ( Dr Bell reports " several measurement of diastolic hypertension, wich is a dysautonomia, so poor brain blood flow, like in others cases of O.I.
- P.O.TS probably, as my pulse increased + 34 bpm after min standing, and + 24 min " only", after 18 min standing ( but ! Measure was at +9 min )
- tachycardia at resting
- Each times i'm standing, or even sitting, my pulse pressure decreased under 40, wich is, according to Dr Bell/Dr Streeteen, impossible to have a sufficient and correct cerebral blood flow...
And on 61 measurements, i had 19 under 40, even with for only activity of the day : standing 30 + 18 min, lying down / legs up, the great majority of the time, and with only " exercise", push my-self or with help in my wheel chair : so , just surviving that way, i'm in hypo-perfusion for 31.14 % of the time
- i take 60 Mg of Artificial A.D.H ( Desmopressine), and a daily antiplatel agent, and have 1 to 3 infusions of saline per week, tring to add me blood volume...Even with that, nothing to do...
- for my strange nocturne hypotension, i do not know what to think about that for the moment
Thanking you warmelly in adance for your time & attention! And i hope some advices (impossible to think, even a little by my self )
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