cordellia

welcome, hoping that you find your answers. i have the same issue-- rapid heart rate with minimal activity. many doctors suggested depression, panic, anxiety... as sources for my tachy... instinctively, i knew that there was something more to it... thanks to dinet, i learned about polar monitors. keeping a journal and charting my heart rate and symptoms (using the polar monitor) allowed me to clearly show my cardio that my ltachy is real and life altering. i also wore the montior to my medical appointments and simulated washing my hair or brushing my teeth-- watching the monitor climb really got his attention... and galvanized him to act: referrals, further testing, holters, TTT.... i am still searching for answers, but the documentation was helpful in presenting my case. i wish you well. dinet is a wonderful resource. there are so many kind and knowledgeable people here. i learn something each and every time i visit. best, cordelia

good evening, thank you-- to all-- for your responses. your shared experiences go a long way toward allaying my fears and apprehension. i will increase my daily fluid intake-- and see if there is improvement. had stopped using added sea salt--- and seeing the reference to saline jogged my (foggy) memory. will add incrementally and see if things improve... will report back if cardio has anything salient to add. again, thank you! best, cordelia

greetings all-- i apologize in advance for this tiresome post. someday i hope to tap out a pithy upbeat paragraph with some tremendously positive news, intelligent guidance.... but for now i am simply frustrated and filled with questions. please read on... Q: does any one have low systolic BP and normal diastolic BP when standing upright? say 90/72? 100/78? Q: how common is narrowed pulse pressure amongst us? i have read a variety of posts that reference narrowed pulse pressure, but i am curious as to how many of us deal with this regularly? seated my BP is normotensive... but upright something new is happening. scheduled to see cardio next week-- but in the meantime trying to deal with the added weakness lightheadedness etc that accompanies this new BP development. when i discussed the BP issue w/ PCP last thursday she said that she had lots of people who "get around with low blood pressure" moments later she chimed in with: "i have your EMG results" "oh there is nerve damage that is affecting your left side--so it is not in your head" i was enraged by her cavalier attitude--but i need her referral for the mayo... so i basked in her blather and took a copy of the EMG results, needless to say she offered no real input re: the narrowed pulse pressure or the low systolic pressure. (an aside--am looking for new PCP in boston area... your suggestions would be appreciated) i feel very unwell when my pulse pressure is narrowed--under 20 is a challenge. am NOT on any meds that affect BP or beta blockers. would welcome and appreciate feedback re: lowered systolic pressure and narrowed pulse pressure in general. thank you. with healthful regards, cordelia

knowledge is power. julie, thank you for sharing. with my best, cordelia

oh yes... the self censoring... the dismay... the tears... the frustration... the fear... your story sounded sadly familiar... i am so sorry that your were subjected to such mistreatment and blind ignorance. my heart truly goes out to you. your friend sounds like a caring individual-- hoping that you are able to connect with the doctor of your choice! please persevere! you deserve to be heard and to be treated with courtesy and respect. healthful wishes, cordelia

hello julie, someone gave me an oxygen/pulse finger meter--on my birthday. never imagined that i would covet / appreciate such a thing... it has helped me to quantify how and when my ox-sat levels rise and fall. the device, as i am sure you know, fits on any finger and quickly reads HR and ox-sat levels. the daily info helped me to understand more fully what actually occurs with regard to my oxygen sat. ? is your plasma sodium below 140 ? bon courage tomorrow! cordelia

dear julie, your good counsel and kind words soothe and inform... when i see that watermelon slice i know that something very worthwhile will follow... you are a beacon. you light candles with every syllable. hoping that your path leads to healthful place--and the right answers. please know that my family and i are holding you in our thoughts. my father, who has grown very fond of you--on the page-is praying for you. cordelia

hello julie-- i am having a bout--so forgive any lapses in syntax etc... will try to answer your questions... beta blockers: my HR often plummets-- thought that the BB were counter intuitive so opted not to take them cardiac rehab: my original prescription from cleveland (summer 2009) reads: cardiac rehab II under supervision for cardiovascular/circulatory re-adaptation preceded by EKG stress test i was out of shape, over weight, exercise intolerant. cardiac rehab helped with all of this before dysautonomia-- i did the elliptical machine, yoga, pilates etc... i had great stamina... since you are already in good shape--perhaps there is a different sort of protocol that can benefit your heart i am going to investigate yogic breathing techniques again. i notice that my diastolic pressure is lowered dramatically when i practice controlled breathing. guided imagery and mind/body CD's have also proved to have a real impact. unfortunately, i am often lazy obstinate and filled with self pity... so i have not been consistent with the yogic breathing/imagery and mind/body exercises... 2011 is on the horizon... hoping that i find inspiration and motivation in the new year. it encourages me to know that you are running! KUDOS!!! presently i am often breathless i do not attribute this to DD (i also have allergies and reactive airways) but who truly knows --so much of this overlaps a boston based cardio was emphatic when she stated that diagnosing early stage DD is difficult. more importantly to me she carefully explained that diastolic dysfunction is NOT the same as diastolic failure. julie, was there a mention of a stage/classification in your assessment? mine was termed stage I. with all my best, cordelia

hello dear julie, i am very sorry that you are dealing with all of this... like you-- i was overwhelmed--shocked when i came to understand that DD is essentially heart failure for what it is worth... here is my experience with DD last year cleveland diagnosed me with DD; cleveland prescribed cardiac rehabilitation, beta blocker and a reduction in my salt intake note: i completed 20 sessions of cardiac rehab and but did not opt for the beta blocker last winter: i had another stress echo in boston (MGH) and a subsequent stationary EKG was told that based upon new results i did NOT have DD. a third cardio was brought in to confirm. i was relieved... my EF was higher... who knows why or how... no one offered any real explanation---but in an aside one cardio implied that DD is difficult to diagnose presently, i do notice that my diastolic pressure is OFTEN higher now (systolic low/normal) and my pulse pressure is consistently narrowed--particularly while i am excited, nervous or simply feeling unwell. i will continue to monitor and log BP's.... the DD diagnosis galvanized me and i am hyper vigilant now. julie, you are in my meditations. sending well wishes and healing thoughts your way cordelia

happy holidays all! my resting heart rate supine: mid/high 40's-- runs lower early morning & late evening. HR drops when i am still or very relaxed. stairs, arms overhead or outstretched, washing face, brushing teeth all cause HR to spike: 130's--160's. the tachy has a rapid onset/offset... cheers! cordelia

hello lina--merci for the feedback. support group is a marvelous idea; unfortunately, i am never in boston long enough to participate in much of anything. (with the exception of medical appointments) thank you again for offering your insights. with healthful wishes, cordelia

tired female: irish/french canadian-paternal; irish/italian/greek-maternal

hello--- using OMRON-HEM790IT... for the most part we are pleased with it. best, cordelia

good morning, very sorry to hear that you are experiencing new difficulties... you are not alone.... my condition waxes and wanes. it is capricious. i have had "good periods" where the more challenging symptoms abated. then there are times when i am plagued by a debilitating round of symptoms.... depression and anxiety compound and amplify all of it... sometimes these more difficult phases last for weeks... guided imagery, surrounding myselfwith positive people and energy, stress avoidance, good nutrition, supplementation, electrolytes/hydration, moving about even if it is simply a few steps each day---all seem to help me to regain my strength and move toward better health. there is nothing unique in my arsenal.... these are simply measures that work best for me. (note: i have been ill for 6 years) there were periods when i was bedridden---unable to do even the most basic tasks... i lay there thinking that life as i knew it was over.... at times, i was simply too tired/weak to think or contemplate anything at all.... after that terrible period-- i regained a measure of strength, actually began working again (limited)... found myself walking (albeit slowly) ... and partaking in life... there are good days and bad now. we are not sure what changed or why... but i am grateful-wholeheartedly grateful to know that improvement and recovery are possible. i cannot say that i ever feel normal or entirely whole... in fact i have never felt "normal" since that onset 6 years ago... now i cherish the days when i am mobile and able to think clearly, to participate and to simply be... recognizing and accepting my limitations is difficult for me and for those around me. my energy helped to define me... i was indefatigable. now a common cold, a minor infection, a dental ailment can undo me... however, i cling to the FACT that recovery and improvement are possible. when i am in an acute phase--i embrace the notion that my body is remarkable and that healing is possible. then i do all that i can to help it along... i know that that every person is unique and that my story is just that: my story. wishing you well and closing with healing thoughts, cordelia

an aside... sensors on forehead... when i had my TTT and tilt training sessions, in central europe last summer, they placed sensors on my forehead... and as you wrote--these are to measure oxygen saturation... when i took my results to mass general a few weeks back.. i explained that the TTT's (4 or 5) were performed in the EU. my doctor looked at the results and asked, "what are these columns here..." i explained that the ox sat --for both the left and right hemispheres were documented in these columns... he looked suprised and asked how they measured the ox sat... i said that i thought that the sensors on my head must have provided the data... the woods are dark and deep EVERYWHERE. please share what you learn. wishing you good luck on the journey for answers... with my best, cordelia

good luck! hoping this new path brings answers... wishing you all the best. cordelia

hello daisy, VERY much appreciate your insights. the pressure/whooshing/weakness... i know these signs/symptoms well--and like you, i cannot tell if i am hypo/hypertensive... either way the symptoms are challenging. meeting with cardio in ten days. will push for the testing that julie suggested. do you know what tests/markers determine the hyper-A form of POTS? many thanks ! with healthful wishes, cordelia

julie good evening--- i am listening and heeding---this a cautionary tale... cardio's NP was impatient and somewhat annoyed when i requested the echo and ultra sound. will see if i can cajole the new neuro... once again--thank you for your concern and invaluable counsel. your goodness is evident-- even on the page. your friend is fortunate to have you by her side. closing with healing thoughts and well wishes... cordelia

good morning julie, ' re: the cath--so hope that all went well yesterday for your friend... peace and well wishes, cordelia

dear dear nowwhat! laughter is a gift... and i laughed aloud for the first time in days... thank you for your comedic take on a rather bleak situation. was interested to read about your BP morphing. hoping that you find a workable treatment that addresses this... i appreciate your sharing your experiences and history... once, i was a straightforward individual--prided myself on my ability to communicate well and succinctly... illness has silenced me and made me fearful. on capitol hill i advocated for people like my present self and i was quite good at making things happen. today, i am ruled by fear--often mute in the face of unreasonable medical providers (the legions of ego driven department chairs/heads or knowing fellows that actually know nothing) fairly certain that everyone here has a tale to tell in this sad vein... i am culpable... and allow myself to be mistreated. i think that the threat of being without care undoes me... there is also the fear of being branded as a problem patient... and of closing off other avenues --or access to providers that might see my history and RUN... my husband is from a medical family (not an ANS specialist among them) and i am often privy to tales from the other side... there are patients that live in a microcosmos and fail to understand that physicians inhabit a larger world populated by legions of very sick people... my brother in law (a fellow at the time) was living with us he was/is a gifted doctor--open and accessible, bright and focused. i watched and listened as patients pushed past boundaries, accosted him in social situations, downloaded their ailments and woes without regard for the fact that he had a host of other patients and commitments. i marveled that he was always kind and gentle... thoughtful and above all--caring. i would often chide him... how do you put up with all of it... of course i was not ill back then and spoke from ignorance... never imagining the desperation that illness can create. thank you again to all... blessings in your paths... cordelia

thank you--thank you all-- your comments and good counsel are so appreciated... it is heartening to know that there are others on this path--who understand... merci julie! in the midst of your own challenges you reached out and i so appreciate the kindness and caring. i took your advice: just returned from ER -- my PCP actually insisted that i be seen...CAT scan clean--blood work unremarkable-- neuro exam: nothing noteworthy. doctor was initially convinced that i was having a stroke. once CAT was read i was dismissed. i pushed for answers regarding the sudden onset of the hypertension, corresponding headaches; weakness; the recent temporary loss of vision. was told to follow up with PCP. will do so tomorrow. i live in my body--something is not right. hoping that my PCP is willing to work with me to find real answers. hoping that we all find real answers. with healthful wishes to all... cordelia

thank you autumn and thank you elizabeth... so appreciate your support and feedback. autumn-- yes, i know that feeling ... my BP readings were so high yesterday... i kept thinking-- they are definitely going to label me as a hypochondriac. elizabeth-- i am not on BP meds--no midodrie-- currently taking: armour thyroid: TSH is 1.89 so no thryroid issues; multi vitamin; vitamin D; B12... no meds that would normally effect the blood pressure... wishing you both wellness and providers that are intelligent, patient and caring... best from boston, cordelia

hello all--- this morning i went for a TTT in boston. the director of the lab is a bully---a deeply unpleasant individual... he was so rude during my last visit--that a contrite visiting fellow crept into the examining room and attempted to apologize for the head honcho's heinous behavior... i vowed never to go back--and yet here i was--- two years later---strapped to the tilt table...alas you know the drill... was shocked to see and feel that i was consistently hypertensive for much of the TTT. no tachy but CONSISTENT hypertension... normally (for the past six years) i run low with a some break through hypertension. BP varies--but generally speaking HYPO rules. last summer had four tilt training sessions and never really broke 100/60... dipped to 60's/ 40's... during those summer sessions was bradycardic for the most part. this time around-- BP's 170's / 60's... i am not on any BP meds--never have been. so there is nothing new in the mix that would account for this change. trying to piece together what might be different... for the past few months have been experiencing a new type of head pain; different than the usual dull pressure that is often present in the back of my skull, ln september i suddenly lost vision in my right eye, pupil dilated and would not contract ... off to the ER... clean MRI--vision restored one day later. ER doc sent me home without a Dx and a neuro referral. today after the TTT--asked about what could account for this change from hypo to hypertension--was told that there would be a followup in may 2011--unless anything "looked serious"... and then i would be contacted. i was sent on my way--too weak to argue the point. my husband is out of town so i was solo today. hypotensive--to--hypertensive... wondering if this is a familiar scenario to anyone out there. bought a new BP monitor this evening... thinking perhaps it was all white coat hypertension...BP still elevated. sorry to drone on... feeling bad---head throbbing and BP rising. last few weeks have been very challenging... and i am having difficulty making sense of this new development... and wondering if it means anything at all. waiting for appt with PCP... healthful wishes to all, cordelia

merci for your feedback MTG... dysautonomia is so nuanced... feels as if it is an impossible balancing act sometimes... so grateful that there are so many well versed people on this forum that reach out across the ether to offer good counsel! will talk with MD about potassium supplements as well as the other supplements suggested. thank you for chiming in with your experiences--sometimes it simply helps to know that someone else is walking down the same road. with healthful wishes, C.

hello friday 7: thank you for sharing your experience... am going to add more potassium to my diet: bananas in my protein shakes and a supplement as you suggested... now wondering if i am over-hydrating and losing minerals etc through excessive urination.... will look into electrolyte sachets. meeting with doctor next week to review all. again, thank you for your insights. with healthful wishes, cordelia