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About cordellia

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  • Location
    central europe
  • Interests
    mad for: my husband, puppies, gardens, 18th century architecture, painting, reading and paris

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  1. yes to PVCs; i experience thousands per day: anywhere from 3,000 to 14,500 (recent holter) my EP is pushing ablation--since i do not tolerate BBs. the breathlessness i experience with PVCs is the most bothersome aspect for me.
  2. greetings, the arrhythmias are a constant challenge for me; over the past few years my arrhythmias have worsened. my last holter (24 HR) showed it all: PVCs, PACs, SVT the PVCs come fast and frequently (bigeminy)... alternating tachy & brady--along with the pauses... cannot remember but yes 2.0 seconds sounds right nocturnal brady: low 30's. -- also had low 30's mid day. my issues have worsened over the past few weeks considerably. so next month we will place an implantable recorder: called the linq. my EP says it is small and easy to insert. in the interim, EP also asked me to purchase a device (called alivecor) for my iPhone. will allow me to record and transmit EKGs. fingers crossed--the device should arrive tomorrow. i have been uber symptomatic of late--so willing to try it all. with healthful wishes. cordelia
  3. am certain the pithy article does not tell half of the story... incredible...cannot imagine what YOU have been going through these past months... healthful wishes to bruce! thrilled to hear that mack is doing well... heartening to know school officials are so supportive. blessings in your path julie... ~cordelia PS: eyeing our stationary bike with suspicion now...
  4. he raises interesting questions. i am going to revisit my MRIs-- the idea of alternative positioning makes real sense thank you for posting this... best -c
  5. hello hello all... are there others out there experiencing lower systolic and normal diastolic pressures ie: 90 /75-80. my heart rate is "normal" 70's-80's : during these "episodes" but i feel off--drugged--daffy. really struggling to focus. lately my systolic pressure seems to be lower and my diastolic is climbing. of course when i saw the new internist today pressures were normal... any input is greatly appreciated. healthful wishes to all, ~c
  6. labile: my bp ordinarily runs low-- with a narrowed pulse pressure it is labile and can vary dramatically in the span of just a few minutes 90-85 /60-55 being the average; 70's/ 40's (when i am very unwell); 130's/ 80's with normal activity, spikes with stress or for no reason whatsoever: 170/90 (this is rare--thankfully). thank you for the survey-- interesting...
  7. hoping that you find good answers in birmingham. keep us posted on your progress. safe travels... with healthful wishes, cordelia
  8. hello all: timely topic ... just started the licorice root yesterday.: 450 mg in capsule form. too soon to tell... initially, we mistakenly purchased DGL licorice (this is used to treat GERD symptoms-not hypotension) we then learned that LICORICE ROOT is used to raise pressure... we found it at whole foods. it is widely available online. our local naturopath also suggested a liquid form of the root-- feels that it is absorbed more readily & rapidly. will try both... with healthful wishes, cordelia
  9. sophia--here is another vote for polar. the best HR monitor that i have used. mine is a cheaper model: F6. works very well--consistently accurate. best, -- c
  10. and so it goes... NORMAL: finally spoke with the neuro (my primary at the mayo) she explained that for the most part my current test results were normal.there were a few minor outliers but essentially: normal. the mayo visit was fraught a number of health crises. wound up in their ER: pleurisy; serious trouble with my veins; an unexpected reaction to isuprel post my tilt...the last thing that we expected to hear was that the results were "normal". stress generally exacerbates my symptoms ina large scale fashion... after learning that the results were normal--we expected the doctor to be dismissive and reproachful. she was nothing of the sort... she began to discuss ways to improve and stabilize my overall health... PAST HISTORY:, my husband and i both believe that my thorough history and past medical records helped to portray that reality of my day to day existence- and the severity of my symptoms thankfully we were able to provide results from earlier TTTs (most showed OI and major hypotension) these were done in the EU last summer; along with BP/symptom journals--these included photos of BP monitor results... (we started to photo the uber high and low pressures--when a doctor accused us of incorrectly logging them) my sense is that the new neuro weighted these materials heavily against the present (normal) results... EXERCISE: the doctor recommended, again, the 3 week pain program and reiterated that fact that it would help to recondition and strengthen my body. she was optimistic and sympathetic. she talked about the waxing and waning nature of ANS issues. she seemed concentrated on my de-conditioned state. she also recommended an at home exercise program that consists of stretching, leg lifts, balance ball, recumbent bike... all geared to increasing lower body strength and increasing venous return. MEDS: she suggested that we might trial meds during the summer months since heat intolerance is a major factor for me. HEART: the echo results troubled me--especially on light of my past diastolic dysfunction and LVH-- there was a mild dilatation-mid level-in the ascending aorta--following up with my cardio. oddly enough - for the past several days--feel as if i am in some sort of a remission. do not know what else to term it...this is the best that i have felt in nine years. still experiencing a weird strangling sensation in my neck and a lack of sensation on my left side... but the most challenging of my symptoms have abated somewhat. there is nothing new in my arsenal except prilosec... am not sure what to think about the mayo visit... but i am very glad to know that the DD and LVH are indeed regressed. the dilatation issue that we discovered- will be explored. feel as if the neuro is on board. she ended our conversation by saying: we are here when you need us... so the dysautonomia diagnosis (unspecified origin) stands. i am going to stop looking for the why...at least for now...am going to work at gratefulness--and revel in the fact that i am feeling better. thank you, so much, for your support and kind encouragement during our mayo stay. good night, ~c
  11. very pleased with polar's quality and accuracy. have been using a wrist/chest strap model for several years. do not find the chest strap bothersome at all... very good value--less than 55. USD.
  12. dear brave tearose, your eloquence, your advocacy and the poignancy of your words inspire and strengthen me. thank you for finding the courage to share. with respect and admiration ~cordelia
  13. hello ken-- thank you for inquiring. no, i am not going to participate in the CFS/pain program. my husband and i do not thinkthat it is the best fit for me. will begin an at home program/prescription that primarily focuses on strength training, reconditioning... still waiting to talk with neuro--next week... then i will begin a the program in earnest. sorry that we will not have an opportunity to meet you, wishing you great success! with my best, ~c
  14. dear child at heart... will start sending off requests on monday for films... great suggestion. have had a fair number of echoes through the years... these should offer a good strong basis for comparison. off to search 'aorta". thank you... best ~c
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