cordellia

hello all,

apologies in advance...please forgive my self pitying rant....

no one in my life can relate to what is happening...

the past few days have been particularly difficult for me... nothing extraordinary transpired, but i simply could not bear

feeling lightheaded, weak, anxious, foggy brained, apathetic and.... you all know the litany....

today i was wearing my polar monitor (a daily habit now) while measuring my BP--- i felt 'more odd than usual'...

seated polar read 177 BPM-- then rapidly fell to 50's (i usually experience rapid onset and offset tachy)

blood pressure plummeted: final reading 66/42 HR 57.... it all happened quickly... i was left spent and dazed...

i am not clear about the sequence: tachy followed by drop in BP???... or did the low BP trigger the tachy???

NOTE: normally when i am hypotensive my HR does not rise significantly. i do not understand the

mechanism... knowledge is power and i want to understand... in part to lessen my fear and also to be able

articulate what occurs...

we headed off to the clinic...normal EKG...they drew blood (results tomorrow)

what do you want us to do? they asked... do you want IV fluids? what about potassium....

everyone was well meaning-- truly... but i was well past being civil.... turned around and headed home...

with my 'normal EKG' in hand --then i wept...

counting the days until my appointment at the cleveland clinic...

in the meantime, i am trying to gather knowledge and to understand the mechanism of what occurred

today...

with my best,

cordelia

greetings desiree,

wishing you the best of luck in cleveland. do hope that your visit with dr. fouad is productive, helpful and

enlightening.

i, too, will be meeting with dr, fouad (for the first time) in early july; therefore cannot offer any real useful information

regarding lodging/logistics... the hospital concierge suggested that we book at the intercontinental (which adjoins the cleveland

clinic) it is more expensive than other options, but my husband felt it would be easiest for us--since we will not have a car.

the whole cleveland experience is new to me.... will post details from my visit and any insight that i might gather along

the way next month.

note: dr, fouad's staff has been exceptionally courteous and helpful.

with all my best,

cordelia (cleveland pilgrim)

good day,

am very grateful for your comments and input. thank you all...

will report back re: cleveland and dr. fouad.

with my best,

cordelia

hello maxine,

please accept my condolences-- i am so sorry for your loss.

please revisit the apnea issue... CPAP has made a an appreciable difference for me...

my lung/breathing issues have lessened. i also stopped eating both wheat and dairy

products and noticed an immediate improvement after a few weeks. the difference was

marked. clearly every individual's body is unique---i simply know that CPAP and

diet combined have helped...

where was you sleep study performed? we have had better luck at some labs-- and rather dismal experiences

at others... (both my husband and i have sleep apnea)

with my best,

cordelia

hello to all,

is there any logic to POTS... my POTS seems to morph overnight... a cascade of varied and

contradicting symptoms... one moment i am whining about tachycardia and the next i am carrying

on about bradycardia...

a new, worrisome and exhausting issue...

does anyone suffer from supine bradycardia/ hypotension?

my HR now plummets (40's) when i attempt to lie down... i feel clammy, weak and lightheaded

when this occurs. the act of lying down triggers the bradycardia... HR gradually falls after just a

few minutes...

i am craving a good night's sleep... a night of restorative sleep... note:i do not take any medications

that would cause bradycardia.

am headed to cleveland in july, appointment with dr.fouad... will discuss the supine bradycardia/hypotension

but in the interim... your thoughts...

cleveland is a costly endeavor, for us, on so many levels ... but i feel that there

are no alternatives... we are hopeful and cautiously optimistic...

--how to 'maximize' my 'cleveland experience'?

--what can i expect?

--feedback re: dr. fouad?

as always, thank you for any advice or insights.

with healthful wishes to all,

cordelia

very seldom drink alcohol... as it makes me quite tired. takes very little time for alcohol to effect me (though only consume champagne or desert wines)among friends/family, am notorious for falling asleep after a glass or two... also experience a great deal of swelling (hands, feet, legs, face) after imbibing... cheers....

greetings tearose,

you are in my thoughts and meditations.

wishing you peace and healthfulness.

with my best,

cordelia

how splendid to know that there are strangers who reach across the continents to lend kindness and reassurance.

thank you for your insights and counsel...

heading back to krakow today--the slightest motion still results in tachycardia... will talk with a local doctor there...

aab, i too believe that there is a hormonal component in my case... will explore this avenue with my endocrinologist.

this weekend is labour day weekend in poland-- i will labour to find enlightenment in all of this...

be well.

cordelia

a healthful hello to all,

the last time i posted a question--i received a great number of helpful responses.

hopeful that you can offer me a bit of guidance/input concerning my latest dilemma...

for the past week i have been staying at a spa--nothing posh...just a sweet little place in the

the polish mountains. was feeling quite good--relaxed... even managed a bit of exercise...

though my heart monitor was beeping with nearly movement... i actually felt energetic...

buoyed by my new found stamina, i was lulled into a false sense of healthfulness....

i felt nearly normal... and then today (while seated and thoroughly relaxed) tachycardia...

generally when i experience an elevated heart rate (at times in excess of 200 BPM) it

is a short lived episode and my heart rate quickly returns to my normal baseline. this time was

different... the tachycardia continued unabated for about 10 minutes (now i know from reading various posts

that 10 minutes is inconsequential compared to the episodes that so many of you have experienced) but for me

it was a novel and frightening occurrence. i cannot help but wonder if this a precursor to a new form

of POTS for me...

eventually--after lying quietly and continual rounds of deep breathing my heart rate gradually returned to

baseline. however, now with every movement (no matter how minor) my heart rate jumps 30--40 BPM.

a few steps and i am tachycardic... drinking a glass of water, raising my arms slightly, sitting up in bed...

am trying to summon the strength to pack my bags and go home...

this is the first time that i have travelled alone in years... being here, on my own, was such a major step for me.

now i am fearful and apprehensive...

an appointment is scheduled with my EP this summer in the US... but was seeking answers about onset and

progression before july!

my best to all of you.

peace,

cordelia

hello dani,

i am new here, too... yes, yes, yes.... the brain fog... i often feel that i am simply daffy....

in sloooowww motion...find myself unable to converse normally, lack the ability to concentrate...

searching for words... forgetful... my short term memory is non existent some days...

i started to take tumeric... (with food) and have noticed (after 3 months) that

the brain fog is less frequent... when i am able, i walk.... and the exercise definitely helps

ameliorate the brain fog as well...

wishing you well.

with my best,

cordelia

Hi Cordelia,

I just wanted to say welcome to the DINET family. I'm another European on the forum - from the UK. Good luck in finding an autonomic specialist doctor. I see Prof Mathias in London and he is very helpful.

You mentioned that your episodes of tachycardia start and end suddenly - has a cardiologist said that it is definitely sinus tachycardia and not an abnormal heart rhythm like an SVT? I ask because sinus tachycardia often gets gradually faster then gradually slows down.

Flop

thank you flop....

....for the kind welcome and for referencing professor mathias...

your feedback is so appreciated. all of this is new to me.. we are wading through literature---and attempting to understand POTS and what this diagnosis actually

means....

my husband and i are americans--who have lived in central europe for the last sixteen years. though i am being treated in the US--- i am keen to consult with healthcare professionals here in the EU.

the rapid onset/ offset nature of my tachycardia is perplexing... one doctor suggested that it could be inappropriate sinus tachycardia... a 30 day holter, according to my EP, revealed a rapid `regular' rhythm... how i thought can any resting heart beat over 200 bpm and still be termed 'normal'... when i asked for clarification i was told that i should not be concerned because the rhythm is NORMAL. (several SVT's were noted as well) i was seen at the EP lab at mass general-boston MA; a harvard teaching hospital with a widely regarded reputation. i do not question the credentials of my EP'S... perhaps i simply lack the intellect to process what they are telling me.... i want to delve into this further.

flop, once again, thank you for your counsel and insight.

with warm regards from krakow.

be well.

cordelia

greetings,

many thanks to those who so warmly welcomed me--and to those who offered insight and counsel.

i appreciate your time and your thoughtfulness.

truly,

cordelia

Hello and welcome Cordelia~!

How are you now? I hope having a better day. You will get support here. I am still learning about what I have..dont have.. as I am still being tested after many many years of complex symptoms and episodes.

I am on here every day.. HUGS to you my dear!!

Warmly, Jan

hello wwwm,

there is so much to grasp--so much information to sift through... happy to have a resource such as this...

sorry to hear that you are still struggling to define/diagnosis your condition...

as i wrote in my earlier post--i have made progress over the past few years and for this i am

incredibly grateful... i too am searching for a concrete diagnosis and an effective treatment plan.

thank you for your insight and kind words.

cordelie

good day tea rose: thank you for your welcoming words and encouragement--both are greatly appreciated. cordelia

carinara--

thank you so much for your kind response and encouraging words.

i am interested in locating a physician in germany. our good friends live

in berlin and have offered to help us research local docotors there.

though there are many well intentioned physicians in our area (krakow)

we have yet to find a health care provider with the necessary expertise and experience...

finding the right physician is paramount... i am certain that you can relate...

may i ask the name of your doctor--and his or her contact information?

once again--thank you for reaching out to a perplexed stranger.

with kind regards,

cordelia

hello all,

greetings from central europe.

so happy to have discovered dinet. what a pleasure

it is to read and learn from all of you...

this is my first post and i am filled with questions. hoping that some of you

can offer insight and feedback. would so appreciate your comments...

and if you could kindly share your own experiences. thank you....

i was diagnosed with POTS (june 2008) though i am not certain that this

diagnosis is accurate. two years ago a doctor here in poland said 'dysautonomia'--

another said 'depression', still another postulated 'epilepsy', a fifth chimed

in with 'pre-syncope'....

my US doctor theorized that it all began with a virus. the truth is that i simply

cannot remember the sequence of events leading up to my illness. i know only

that for several years the weakness, the overwhelming fatigue, the insanely low blood pressure,

the palpitations, the lightheadedness and the memory loss... made life nearly

intolerable.

after i lost 60 pounds in a few months and could no longer walk--my local doctor began

paying a bit more attention to my condition.

slowly, with the help of my husband, i made my way back. after several bleak years, i began to improve.

most days i can walk, even stand for a moderate amount of time... the light headedness

has abated... i still am unable to do what i once did (pilates, yoga, elliptical machine) but i am very grateful to simply

be walking. the main issues, facing me now are low BP and erratic HR (tachy/brachy) , palpitations, memory

loss, breathlessness, sleep apnea and weakness...

have had several tilt table tests: my HR dropped to the low 30's as the test was

starting--test cancelled... TTT two--lost consciousness after nitro... TTT three

deemed inconclusive...

holter(s) captured the erratic heart rates...

my heart rate varies dramatically--while lying still it ranges from low 40's to low 50's.

if i turn over in bed, move suddenly-- it can instantly shoot up 30 --40 points... it is as if my heart is

hyper responsive to any stimuli or motion. brushing my teeth, washing my hair... can result in

a HR over 200... the tachycardia has a rapid onset and offset... the tachycardia

occurs throughout the day... even while i am sleeping (according to recent holters)

my blood pressure is another saga... some days 80's / 50's and on good days

low 90's / low 60's... BP changes quickly as well.. pulse pressure is another issue...

does anyone else with POTS have rapid onset / rapid offset tachycardia?

low HR while lying down or being still... i am perplexed by this aspect of the

condition.

am scheduled for a followup in the US in may. doctor says he would like me

to try beta blockers... with my heart rate in the 40's periodically, i am fearful

of BB's. can any one offer advice?

some things that have helped me:

each day i take tumeric (1600 mgs) COq10, armour thyroid, and a host of vitamins.

have also taken butcher's broom (succeeded in raising my BP--i was very pleased with

the effects)

my lightheadedness was chronic for two years. last year i developed an ear infection--

could not eradicate it... doctor tried augmentin, sumamed and finally cipro--this went on

for weeks... after about five weeks of (high dosage) antibiotics i noticed that i was no

longer lightheaded... am not sure if there is any correlation---just thought that i would

put this out there.

for me congestion is a problem: i cannot take any cold remedies--BP plummets and i am utterly

daffy... for nasal congestion i use sinus buster--a natural pepper spray that works incredibly well

for me. i also use muellin oil-- whenever i have respiratory issues--a godsend.

after 3 months of taking tumeric my hands and feet are warmer--my blood draws are easier and

my fibrinogen count is lower.

i know that i have covered lots of topics here--forgive my lack of segue... any feedback you

can provide especially regarding rapid onset/ offset tachycardia woud be most helpful-- i do not have

the chronic tachycardia that seems to be a hallmark of POTS...

closing with thanks and best regards to all.

cordelia