cordellia

hello elfie, tossing out CHF and then not following up with you---is simply not acceptable. please be vigilant and ask for the information and answers that you need and deserve. i am sorry that you are struggling with so much... the search for real answers is tiring and stressful... i am still searching for answers myself--and know first hand how debilitating the process can be. hoping this last semester goes well and the internship is rewarding (and manageable) --good luck! with healthful wishes, cordelia

hello jana-- many thanks...excited by the prospect, but tempered by realism...wishing YOU well... with my best, ~c

good morning, thanks to each of you. not certain what to expect...but very grateful to be going... trying to organize records and to put together a comprehensive history/overview. want this trip to have a real yield. julie, thank you for your earlier advice about defining objectives for the visit. i sincerely appreciate your input, encouragement and prayers. healthful wishes to all...

spring greetings to all: have been combing the archives and searching for info relating to the mayo... leaving for rochester on monday. scheduled to meet with a neuro named paola sandroni on the 22nd. has anyone consulted with her? feedback? tips on the mayo? this is very last minute. we were notified today--little time to prepare. am so grateful for this opportunity. hoping that i can learn and share. my main issues continue to be: hypotension, bradycardia, exercise and heat intolerance, inability to stand for any length of time, flushing, random tachy, occasional hypertension. would be thrilled to have a REAL diagnosis... or at least a better understanding of what is happening to me. trying to temper my expectations concerning the mayo... but optimism keeps rearing its cheery head... with healthful wishes, cordelia

elated! thrilled and inspired by by your good news. ~c

very happy to report CA ultra sound--normal. still hoping to understand what is causing this pressure and pulsating. though symptoms remain unchanged---am assured by ultra sound results. wondering if this could be GERD... thank you to all for your concern and input. with healthful wishes, ~cordelia

hello jana-- am very fond of the polar monitors (F- 10 series w/ chest strap-- mine is one of the less expensive models) it monitors only the HR--and does a good job of it. i wear it in the shower (on very bad days) accurate on land and sea! have tested it against other monitors and at doctor's office. they and we were surprised by its accuracy. do not know of a monitor that tracks BP. with my best, cordelia

hello all-- nothing to report. ultra sound was on friday--results on tuesday. am vaguely certain if there was anything noteworthy there would have been an earlier read. symptoms unchanged. pulsation still visible--though now only when supine. not sure what to think at this point. could this just be another odd manifestation of the dysautonomia... with best and healthful wishes to all, cordelia

hello all-- thank you for chiming in with good counsel and good sense. today, cardio was reassuring-- he (like the PCP) suggested that this may be connected to muscle strain... but he also said that given the other symptoms--he, too, wanted me to do the ultrasound of CA tomorrow. i will update after CA. in the meantime i am all about blood thinning-- grape seed extract and aspirin... perhaps i am slightly paranoid at this point. seems that it is never something delightfully simple or mundane... after the myriad of health issues these past years-- i am left feeling leery and perhaps a bit paranoid and a bit frightened... i am so grateful to have this marvelous consortium of fine minds... what a resource, what a gift. jennifer, the pneumonia seemed to effect everything... out of nowhere: wacky HR and major issues with bending over. for me, bending over is never easy--but recently, trying to pick up the dog resulted in disaster: started to black out... managed to drag us both to bed... frightening... goodbye proprioception. this last bout was difficult---came on without warning. it all much better now-- except for the maddening neck issue... oh, and the coughing lasted for some time and wreaked havoc with my heart rate. please take good care. i refused to slow down and dragged myself about--a terrible mistake-- i paid for my hubris. with my best, cordelia

oh sandy, what an ordeal. you have my heartfelt empathy. best of luck with the testing and ferreting out good answers. my lungs/pneumonia finally cleared after prednisone, several steroid based inhalers-- and an antibiotic... sending healthful wishes your way. thank you for taking the time to respond in the midst of your own crisis. with my best, cordelia

greetings all, for the past week or so-- i have been experiencing some odd new symptoms... does any of this sound familiar to anyone? as always your input and insight are appreciated. with thanks and healthful wishes, cordelia --right sided neck pressure--a sense that right side of neck is being constricted--runs from clavicle to just under jaw --right strangling sensation--more pronounced when supine--feel as if there is something compressing the right side of outer throat --visible neck pulse--visible with each heart beat--visible when seated or supine scheduled to meet with cardio on thursday--and i will review all with him. PCP suggested that issues were related to a muscle strain (had pneumonia--lots of coughing--still recuperating) however, this does not feel like something awry with the musculature...

thank you very much. need time to read and re-read---and read again! best, cordelia

my heart rate varies: from 40's (supine) to over 200. i am not on any sort of medication fortunately, the tachy has a rapid onset / offset. heat/ arms overhead trigger my tachy i try to sit while brushing teeth, washing face etc... this helps a great deal

hello all, recently did a few rounds of testing (blood/urine) and was told that 5HIAA was elevated and this along with some other symptoms suggested a carcinoid tumor. followup CT scans were clean, my endo was visibly relieved when she gave us the good news... she is a fine doctor with a very caring attitude. her name is alina gavrila. her foci are diabetes and obesity. i was referred into the endo clinic (beth israel, boston, MA) and she happened to have the first available appointment. my dysautonomia is foreign to her. she explained that i need to find a good neuro... (the search continues) in spite of her unfamiliarity with autonomic issues, she tried very hard to help. she ordered tests and more tests--left no stone unturned... battled with my wretched insurance company and wrote lovely referral letters, returned calls quickly and took her time in office to share and explain... though we came up empty handed--i am so grateful to have met her and happy to report that the scans were clean. with healthful wishes, cordelia

floaters now and then... but on a few occasions i have seen a grid that covers all surfaces--sometimes it is gray other times white. i have only seen the grid upon waking and in dim light. it effects both eyes and last for several seconds. generally, my vision is quite good--reading glasses... best to all, cordelia

dear tearose thank you for finding the strength to share this horrific and cautionary tale. peace, cordelia

MCAD-- i agree --this possibility should be explored. will discuss w/ rheumo again. though if faulty memory serves me correctly--she suggested a consult w/ geneticist.

pheo testing negative (part of the 24 hour testing-i thought) the heat--- yes any warm environment is a challenge. in addition to the flushing-- i often experience a sensation of warmth or heat on my face and (rarely) neck. it is distinct from the sensation of warmth that i feel just before the pre-syncopal episodes. i know that diet plays a crucial role. hoping to return to a raw foods diet or at least a few days weekly. caffeine is new to me. just started drinking coffee (decaf) this year. am going to ween myself from this new addiction. it certainly is not helping things... sue good luck on your journey. i understand that these sorts of things are notoriously difficult to diagnose. please update when you have news to share. i am obviously interested in this as i am still on the discovery path myself. good night, cordelia

my memory ranges from poor to nonexistent. like you, i do NOT know what i did yesterday. strangely enough, when i look at photographs my recall is jogged and i am able to remember events that were lost to me. the memory loss is frightening. i try not dwell on it... it certainly forces me to be present.

hello sue-- initially a 24 urine test was done; endo said 5HAII? 5HIAA ? elevation was minor; also said she there could have been a dietary component that caused elevation, she was vague. i was not on a restricted diet prior to the test. lab handout simply warned to avoid foods containing idoles. urine was retested-- waiting for results. endo went ahead and scheduled CT without waiting for results of second urine. i like her proactive stance-- even if BC/BS does not. my facial flushing is confined to my cheeks-- occurs randomly it is a dry flushing swelling in forearms is minor -- began about 1.5--2.0 years ago. recent bouts of nausea--short lived no vomiting headaches seem to accompany the hypertensive episodes seem to have more gastro issues as of late as well. how does all of this compare to your experience all of this seems to be rather random-- nothing quite piecing together neatly. best, cordelia

hello-- thank you for your replies... they are fully appreciated. i will refrain from comment re: health insurance--no one deserves my sad treatise. ponder: hoping that the self pay (CT scan) counts toward our deductible. not certain how this will work. will start the phone game again on monday... best, cordelia recent symptoms: lightheadedness hypo/hypertension breathlessness edema in forearms--slight heaviness and pain in chest facial flushing-- a major episode, in office, during an exam, prompted the ordering of tests weakness anxiety exercise intolerance

my weary endo rang yesterday. she tried unsuccessfully to convince our insurance co to cover a series of CT's. (chest abdomen and pelvis) they ultimately agreed to cover all but the chest. i am out of network and out of patience. evidently results from my 24 hour urine testing -- led her to order the CTs in the course of their refusal--blue cross told her to do a chest Xray first-- if that was abnormal, then she could order the CT. even i know that the specificity of an Xray vs that of a CT is not comparable; so now we are forced to pay for a very costly CT scan... although it is most unlikely that a carcinoid tumour will be found,-- we feel that we must rule it out. the endo';s persistence and her willingness to battle the blue goliath impressed me. am striving to find the goodness and light in all situations. trying to practice gratefulness...i am truly grateful to have her on my care team... but still i loathe the colour blue. if there are any suggestion to dealing with this blue monolith please share. bonne weekend to all

so wonderful to hear that you have connected with a interested,, open minded and caring doctor. i wish this for each of us. an intergrative approach appeals to me intellectually and emotionally. we are searching for the same here in boston. there are several centers that offer a combined approach. will happily share our findings if anything positive or useful emerges. blessings in your path-cordelia

good question--interested to read the responses fluids: i try for 3--5 llitres daily ; helpful--but difficult to balance "intake" and :"outflow" electro light mixture: powdered form : helpful supplementation with: raw multi vitamin; vitamin D; magnesium/calcium; flax oil; omega 3; b 12 armour thyroid: less fatigue now antibiotics: when i am taking antibiotics--i feel appreciably better previously butcher's broom--very helpful in combating hypotension (dev problems w/ tachy and random hypertension so discontinued) horse chestnut: helpful--aided in temporarily reversing hypotension stress reduction/meditation/guided imagery: very helpful compression stockings: helpful especially in warm weather. i use a lighter weight brand rest, rest, rest : helpful and necessary heat avoidance--this is crucial ice cold water rinse for legs--at the end of every shower-- minimizes the effects of showering no prolonged standing; sitting low carb diet/organic foods: very helpful SCRABBLE

you packed so much into those paragraphs--thank you-nowwhat... yes--i need to wean myself-- am presently tethered to the BP monitor. if is a fear based behaviour... when i am at my lowest points-- i cling to the numbers... and try desperately to make sense of it all... the "see-saw quality" is maddening... today tried to be more consistent with fluids... it seems to help; also avoided my beloved cohort the monitor... salt: like you, i have craved salt since childhood-- am not sure whether it helps or hinders me at this point... i do know that i adore it... aiming for whole, well and sane in the new year. merci again, with healthful wishes, ~c