Jump to content

cordellia

SUPPORTER
  • Posts

    118
  • Joined

  • Last visited

Everything posted by cordellia

  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
  15. merci merci to all...your words of encouragement spurred us on and lit a path when we were overwhelmed... back on the east coast--after a 10 day visit to the mayo. trying to gather my strength--scheduled to return to EU in a few weeks. happy to be on the ground for the time being... mild aortic dilatation: during consult--EP was very reassuring--i was palpably relieved to reconfirm regression of LVH and DD. HOWEVER while reviewing mayo echo summary, at home, we see: OTHER ECHO FINDINGS: mild ascending aortic dilatation 42 mm at midlevel. no mention of dilatation on any of my previous echos. now i am rather apprehensive--my elation is dampened. wondering what this means and why EP did not address this... is there anyone dealing with this sort of issue? mind spinning-- looking at possible causes: predisposition? hyper-mobility but tryp. was in the normal range... my BP was generally low--now more frequent episodes of hypertension. will ask cardio to do another echo in the future. (but in the here and now-- we are a bit anxious) followup with mayo neuro scheduled for next week. will quiz her on this... as she is my primary... forgot to add--we were unable to have final meeting with neuro before departing rochester. we are going to do review all via skype. was surprised and HAPPY that skype was offered. according to the coordinator relatively few of the doctors will offer "skype visits". initially, we were simply asked to reschedule. with my best, cordelia
  16. fantastic! so glad that this is happening for you... wishing you the best!... anxious to hear how it all goes... good luck... ~c
  17. many, many thanks to all. this has been an interesting journey. one that i hope yields answers and points me in a better direction. final meeting with neuro tomorrow. wishing the best for each of us... ~c
  18. hello all, met with EP (margaret lloyd, MD) today and NP (cardiac) to review test results: stress test, EKG, holters etc...happily no structural issues. normal EKG, normal stress test. several years ago diagnosed with LVH and two years ago (at cleveland) diagnosed with diastolic dysfunction. no evidence of either yesterday. my EF was 55 at one point. measured at 67 yesterday. (assuming+/- 5%) julie, i thought of you as i sat there listening to the summary. dr. lloyd counseled me to continue CPAP. (my last sleep study was normal) she feels that CPAP is "an important aspect" of my self care --particularly in light of the previous LVH and DD diagnoses. all of my mayo testing has been "normal" with the exception of holter monitoring: HR & BP. we were fearful that because my testing looked normal for the most part--that i would be summarily dismissed; penalized for being here during a spate of good days.. she summarized by saying that the TTT is a dirty test. we can give this test to you on seven different days and get seven different results. we will treat your symptoms, not your test results. dr. lloyd, like all other providers, stressed re-conditioning. 02 sat was low during stress test. she said that this too was probably due to de-conditioning. felt that rehab would help to address this as well. neuro will be the last word. hoping for something more definitive. doubtful... but very glad to know that my heart is sound. with my best to all, ~c
  19. greetings all, still wandering about in mayo-land. lots of testing. the consensus so far is: orthostatic intolerance-- more autonomic testing tomorrow. they also throw POTS into the conversation--we think because of 30 point HR increases that were documented on holter. unsure of the particulars. will not see neuro until the very end of our stay. each time we dig--we are told (politely) that this will be covered with the neuro. to date have had consults with: neuro, a pain management specialist (not productive-- we did not click and she started out by suggesting that i needed a TCA for my depression) my husband, who has been down this road before, leapt in--called a halt to the suggestion that depression may be a root cause of my illness) neuro organized this meeting so that i could explore the 3 week pain management seminar offer at the mayo. (more details below) for the most part the meeting was non productive-- except that she ordered some blood work and a baseline EKG. my husband asked how she determined that i was depressed. she explained that i completed a questionaire earlier (approx 20 questions) and my score reflected depression. TTT: today's tilt was deemed normal. EKG: awaiting results. stress test tomorrow--additional autonomic testing (not sure what exactly) later in the week. during the tilt (the room was cold) it went well--weak and fatigued but stood my ground to the end. then came the isuprel. not much of a response-- HR rose about 20 points-- topped at about 115 then began to trend downward. nothing noteworthy... i was not surprised as my tilts vary... however, once the table was lowered and i was supine my HR climbed to 155 and BP rapidly rose 150's/ 90's. the nurse became concerned and paged my neuro. i wound up in the recovery area --after 30 minutes BP was 90/44 HR 62. i was spent and we cancelled remaining tests. wondering what the neuro will make of this. HOME EXERCISE PROGRAM: an aside: was notified that i did not qualify for levine's study. however, mayo offered me a similar (at home) program that focuses on increasing lower body strength and development of the leg muscles. today doctor was emphatic: you must exercise and pace yourself. this is a lifelong commitment-- 5 X (45 minutes sessions) weekly. he went on to to say: this is a three prong program: hydration/electrolytes, lower extremity strength training to improve venous return, plus aerobic exercise on a recumbent bike... sat there thinking, i cannot wash my hair without going into major tachy... but i am going to embrace this program and see where it leads. there was nothing new... but perhaps i am in a different place mentally. i just feel ready to try again... will be happy to share program details as soon as i have them. PAIN REHAB: the neuro is also pushing strongly a 3 week pain rehabilitation center program. i am going to opt out of this one... want to focus on the other proposals first. additionally our insurance, more than likely, will not cover it. however, we talked with a young woman who is currently participating in the program. she is starting week 3 of the program. she was thrilled with her progress. she said that she was spending the majority of her day in bed and that pain kept her there. the program changed my life she said. she joyfully endorsed the program. her mother was visibly moved when she discussed this young woman's recent progress and healing. we met abby and her mother in the cafeteria--it was all happenstance. this lovely young stranger buoyed my spirit and inspired me. not sure what program entails--or who it is actually best suited/designed for...saw several references to it in other posts. we were told that it was suitable for individual w/ POTS and those suffering from challenges such as lightheadedness...we did not attend presentation only had recommendation from from an internist and a program instructor. anxious to see where all of this leads... wishing for each of you health and contentment, cordelia
  20. greetings from mayo-land, thank you all for your notes and well wishes.... please forgive this painfully long rambling narrative-- tired and a bit unfocused. the hotel (springhill suites: clean/not pretty) is minutes from the mayo. free shuttle service to and from hotel makes our lives easier. the rochester locals have been very kind and courteous---lovely people. good food is local grocer with a large selection of organic food--a respite from the mayo offerings. about a 1.5 miles from the mayo. MAYO the support staff that we encountered at the mayo are well trained, very patient oriented and helpful. most were knowledgable and keen to share their expertise. the appointment: we received a call, from the mayo, on march 18th--notifying us of appointment (neuro consult) on march 22nd. we dashed about trying to ready ourselves. we were initially told to plan on being in town for 3-5 days, later 5-7 days....most recently through april 1st. we are grateful to be here.... it is just a bit longer than we were anticipating. however, we are glad to stay on if we are moving toward a diagnosis and a workable plan.... neuro consult: she was awkward and seemed unable to make eye contact with me. at times i did not think that she was listening.... she focused on her computer monitor and literally did not look up until it was time to do the physical exam.... however (after reading her notes) it is clear that she was listening and processing all that i said... she ordered up a battery of test and consults: TTT, sweat test, 24 urine, blood and endo work ups, EKG and BP monitoring/holters; consult w/ an EP, consult w/ NP who administers a chronic fatigue program at the mayo. (though i do not have pain nor CFS ---neuro thinks that i can benefit from reconditioning) neuro was frank--said that she felt we could/would not know what caused the onset of my symptoms. she is focusing on orthostatic hypotension/labile blood pressure/exercise intolerance we want to understand WHAT is causing this to occur and she is focused on treating all symptomatically. NOTE: she prefers to meet with patients alone during the initial consult. (my husband was angry and perplexed when a nurse informed him that i would be seeing the neuro alone--and that he would be invited in "later" during the course of the appointment. he was never summoned. (foggy brained me forgot to request his presence) wound up in the ER on day 2 of our visit. experienced pain in chest upon inhalation. labile BP: 105/63 and minutes later: 178/100. lab techs summoned paramedics to endo lab-- where i was about to begin catecholamine testing-- PM's insisted that i needed to be transported to the ER. spent 12 hours in ER (so missed some scheduled tests) diagnosis: pleurisy. better now. day 3: the hot box: sweat test was unpleasant. but far more thorough and professionally executed than the testing that was performed at beth israel in boston. tech was kind and aware.... helpful and mindful of the fact that being semi naked and covered in powder is not my thing. testing lasted for 42 HOT minutes. the marvelous fact is that you can stop at any time-- a simple shout out calls a halt to the proceedings. my results were termed normal. we were surprised--as i do not sweat--usually turn a brighter shade of pink and collapse.... to date: holters documented: labile BP (no surprise there) hypotension: brady and tachy, some SVT, some SVPC too soon to tell what any of this will lead to-- in terms of an actual diagnosis. will meet with neuro on the 1st to review test results and to sort through it... with my best to all, cordelia
  21. oh julie, poor mack--sorry to hear that he is not well... 75 x 2 on a bike... a feat... wishing him well... best from rainy rochester. ~c
  22. "so i am feeling hopeful"... lieze, lovely to read those words in your closing... wishing you well... here is hoping that these new measures lead you to a better more healthful place... all my best, cordelia
  23. we are en route--armed with more good information. dianne, thank you. my husband's note taking skills will be finely honed by the end of this foray. yes, the "minnesota nice" was in evidence as soon as the plane touched down. best, ~c
×
×
  • Create New...