cordellia

thank you, tearose. will give this a go. best, cordelia

greetings,

yes, the swings in blood pressure and heart rate are frustrating and exhausting. my BP varies greatly: 120's/80's to 60's / 40's. with random

uber high BP readings in between 178/ 100. heart rate is variable as well: 40's while supine and quiet--130's -150's while dressing or raising my arms overhead,

while showering for instance...

polar monitor: i wear a polar monitor (thanks to a recommendation from tearose) and this helps me to

avoid going into my danger zone. often times i actually do not perceive that my HR is too high-- i feel only fatigue, weakness

and lightheadedness. the monitor has helped me to see patterns and to document them. my NP started to pay closer attention

to my litany of symptoms when the monitor i was wearing, during an office visit, clearly showed that my HR was fluctuating

30-40 BPM with the normal bodily movement,

happy thanksgiving and healthful wishes,

cordelia

muellein oil has been a godsend... there are lots of good brands

available-- i put 40 drops in a 2 oz of warm water and drink. it has a rather unpleasant taste--

but gasping is far more unpleasant... loosens secretions and seems to calm my lungs.

sending healthful wishes your way.

best, cordelia

happy thanksgiving to all! question: recent blood tests indicate that i have both low potassium and low sodium levels. doctors puzzled. has anyone else had similar results? any insights? this has been ongoing for some time. feel decidedly worse with these low sodium /potassium levels... i use celtic sea salt with abandon and take multivitamins. with thanks and healthful wishes, cordelia

know nothing about candida... however, had chronic sinus issues for several years; long term antibiotics did not help much.

then i tried nasal cleansing: neti pot /saline solution with a drop of betadine. after a few days, there was real improvement.

after a few weeks: normal functioning sinuses. i did/do nasal cleansing 2 x daily.

healthful wishes,

cordelia

you are not alone... the forgetfulness--the non existent short term memory... frequently count and recount pills (to no avail) trying to figure just out how many i might have taken ... i shout out to everyone in the vicinity: did you see me take a pill? this act is tedious.... will purchase a pill case/tray tomorrow... if i remember.

prefer to sleep with several soft pillows. if not--heaviness/pain in back of head... good night.

greetings tia--

welcome! what a marvelous place this is... glad that you managed to post...

best,

cordelia

greetings,

OFTEN, when lying down HR (after a few minutes) drops to 45--59 BPM... i am not on any sort of medication.

peace,

cordelia

brilliant! the best sort of news... cordelia

yes, there are hours that i feel almost well.. how i cherish those times... but a whole day 'symptom free'--alas never...

not in seven years...

bon voyage!

originally from cambridge, MA... now based in central europe... often fly to the east coast

from krakow ....

last month we routed krakow/munich/boston... the inbound flights were brilliant. no problems

other than the usual fatigue caused by long distance travel.

no issues with the crew... as i darted up/down and around--in an effort to keep my heart rate up and BP elevated...

had a letter from my doctor outlining my condition, the letter also clearly stated that

i am able to fly. water, water, water---salted snacks--moved about as much as i was able.

we fly business class (thank the aviation gods for points) so the ability to recline and position/reposition

my body made a world of difference. we also requested wheelchair service... i was reluctant

and embarrassed to utilize the chair... very glad that my husband prevailed...the walk between

gates would have taken at least 20 minutes...along with stairs, ramps etc... by using the wheelchair service,

i also avoided what was an interminable line at passport control in boston... standing on line is a real challenge

for me... i tried and failed on several occasions...

the outbound flights were problematic--a delay of eight hours-- this caused issues... we were in

transit for nearly 24 hours as a result of the delay.

note i have asked for and kindly been given upgrades on various carriers. there are some

fabulous (albeit harried) agents working the service desks that will extend this courtesy if they

are able.

when are you heading to cambridge? we are visiting, in september, as well.

best of luck with your presentation.

cordelia

sandy shell merci...

a question for you... did you have severe hypotension prior to starting lopressor?

my BP never rises above 90's /60's even while

standing. every body, i recognize, is unique. just trying to gather information.

i am hypersensitive/reactive to medications such as OTC: sudafed/ benadryl/ claratin...

all caused BP to fall dangerously and pulse pressure to narrow... so am particularly wary

of anything that purports to lower HR or BP.

yes, mind set is paramount and i will try to remain calm and focused. breathe......

again, thank you for your observations and kind words.

peace and healthful wishes to you,

cordelia

erika,

thank you for your input... it is GREATLY appreciated... am trying to conquer my fear...

intellectually i know that i should give lopressor at try...

peace,

cordelia

hello dale,

very sorry that you are experiencing this... i am new here and have little knowledge about these matters.

the situation sounds frightening and disconcerting. hoping that you are able to find good answers and

options.

forgive me for answering your questions with more questions: did you experience these swings in blood pressure

prior to the beta blockers? which beta blocker are you taking? during the palps--any idea of your heart rate?

with healthful wishes,

cordelia

healthful greetings to all,

after many delays, we finally managed to visit the cleveland clinic.

lots of costly testing: TTT/hemodynamics/stress... event recorder for three weeks...

diagnosed with situational/conditional dysautonomia... note: TTT was normal...

still waiting for review/summation of event recorder findings.

presently experiencing: bradycardia and tachycardia/hypotension/exercise intolerance... nothing novel... just your average

manifestations of dyasutonomia..

today doctor (cleveland clinic) ordered:

lopressor 12.5 mg daily

levsin SL 0.125 2x daily

was feeling rather panicked... i rang the office (tried to sound reasonable and sane)

mentioned that my "BP has been averaging 90'/60's and last week (a record for me) 60's/ 40's

as well as consistent bradycardia... each and every time i lay down HR drops to the 40's--50's.

i droned on about the intermittent tachycardia. explained, that i am fearful of BB's....

the response was, "she is prescribing a very low dose... call us after five days and let us know how

you are doing". perhaps this is reasonable and i am simply ill informed and frightened.

have often read here that people have had negative experiences with beta blockers.

levsin is being recommended, i assume, for its antispasmodic properties and its 'desensitizing effect'

on the vagus nerve...

thoughts on beta blockers and levsin combo... any information would be greatly appreciated.

thank you to all.

peace,

cordelia

yes, i definitely feel 'better' when on antibiotics. bravo for the intrepid doctor. best of luck to mack. regards, cordelia

ditto... my heart rate hovers in the low 50's---prior to menstruation. best, cordelia

hello,

thank you so much for responding.

was informed that DD can progress to heart failure even if the EF is quote' normal.'

am unsure about the mechanics and hemodynamics involved.

will see cardiologist locally. scheduled cleveland teleconference for next week to discuss the DD finding

and its implication. i will post any additional information.

hope to explore dietary and sodium restriction; paced fluid intake; cardiac rehab....

peace,

cordelia

hello all,

searched "diastolic dysfunction".... found nothing...

does anyone have information/experience...

recently diagnosed with situational dysautonomia/hypovolemia/venous pooling/probable IST... and stage I diastolic dysfunction...

awaiting final report from cleveland... but in the interim any information would be greatly appreciated...

healthful wishes to all.

peace,

cordelia

hello desiree,

returned from the cleveland clinic just today... a vast bustling place...

met with dr. fouad twice. initially, i found her off putting. she was brusque, factual and intent on

establishing a timeline and chronology. i wanted to tell my story, to be heard--- and to focus primarily on my current symptoms...

she spent the majority of the visit discussing the onset of my illness... (seven years ago) however, i now understand her reasoning and

her desire to qualify and quantify my history. in retrospect, i should have made a timeline and been better prepared for the meeting.

i simply began to elaborate on my symptoms and to give examples of how and when... she wanted concrete dates and times...

the second meeting was a review and evaluation post testing. (TTT, stress echo, blood flow/hemodynamics)

this time dr. fouad was expansive, informative---intent on educating us and sharing her findings (my husband accompanied me to the appointment)...

she does not think that i have POTS. she diagnosed: stage I diastolic dysfunction; postural venous pooling; (probable) IST; low blood flow; situational dysautonomia

(sitting/standing); overactive vagal response... final report next week. as was noted in an earlier post: you must follow up with a local health care provider...

without a doubt--she is highly knowledgeable, articulate, committed and caring. time after time, during my visit, staffers commented

that i was fortunate to have her as a doctor. i now concur. you are in excellent hands....

i hope that cleveland provides good answers and workable solutions for you.

with all of my best,

cordelia

hello,

in my case, alcohol is a definite no... even minute quantities cause 'issues':

lightheadedness, edema, pooling in limbs... heart rate dips and BP bottoms out...

best,

cordelia

danya,

thank you for posting your news--it is always heartening for me to read stories and updates

that speak of wellness and improvement.

wishing you good health and contentment.

cordelia

hello,

yes, the BP fluctuations are maddening... i can relate to the obsessive BP monitoring...

am trying to wean myself from the need to test repeatedly...

dehydration definitely exacerbates my symptoms...

water is a curative for me: generally within 10-15 minutes of drinking (minimum 10 oz) water

my diastolic and systolic pressure will rise by approximately 8-10 points... i find that maintaining hydration

is crucial to maintaining any sort of BP stability.

asides:

butcher's broom: i had been taking butcher's broom (cirucap formula-2x daily) and there was a decided

improvement in my BP---as well as energy levels, cognitive functioning... blissful while it lasted....

unfortunately my tachycardia worsened. however, the overall effect on my BP was impressive.

horse chestnut: was also very helpful in terms of elevating BP---but seemed to exacerbate

my tachycardia.

with healthful wishes,

cordelia

ah, the kindness of strangers.... thank you all... to think that if i passed you on the street

i would not know you... and yet you reach out through the ether and lend comfort and

support... your collective goodness overwhelms me.

merci, merci,

cordelia