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cardiactec

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About cardiactec

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    Advanced Member
  • Birthday 02/14/1982

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  • Gender
    Female
  • Location
    Maine
  • Interests
    singing<br />biking<br />electrophysiology!<br />family and friends

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  1. Thank you all for your caring and uplifting words ... what makes it even worse in my situation is that i worked in cardiology and because i was seeing a cardiologist (he didn't work at the facility i was working at) for POTS, that relationship, to some degree i believe has been severed ever since i started working at the last place i was at for a variety of reasons. It's times like these that I wish I was an accountant or something! .... the medical community is a very tight knit community (too tight). All of your words were very encouraging. I am glad I am not alone with this experience and i'm glad all of us can relate to one another and understand each other. It is beyond helpful. Thank you all.
  2. I have been out on disability now for four months and will not be going back to work. I talk occasionally with one of the girls I used to work with and she just told me tonight that people are/were talking about me behind my back saying that they didnt believe I was even sick or was tired of hearing me complain about how I never felt well. I am deeply hurt as one of the people that were making such comments I thought was a friend of mine ..... Sometimes I wish, if I HAVE to have a medical problem, that it could be something more COMMON than all these weird conditions I have. People are more compassionate and understanding to the medical problems they are familiar with (well, at least most of them lol) ...... It just hurts to hear this ...... I tried my hardest not to "complain" while at work but it is hard when you feel so poorly all the time. the hospital I worked before this last place, before i was essentially booted out because I couldn't do 5% of the work (but COULD do 95%), one of my co-workers said "you know, the next place you work at you really shouldn't complain so much or talk about your medical problems, it really gets annoying.... I have tennis elbow and I don't complain about it every day" ............tennis elbow ??? I'D DIE TO JUST HAVE TENNIS ELBOW!! I'm sorry but when you're puking almost every day because your stomach doesn't work, your pulse is 200 and your weak and shaky because of it, and your blood pressure is bottoming out and you feel like passing out ALL the time, its kind of hard to put a smile on your face and fake feeling like a million bucks! ugh. People are so hurtful. Part of the reason why I went out on disability was due to the comment re: tennis elbow and I felt myself not being able to keep quiet about how poorly I was feeling with this newer job..... so I guess they all got what they wanted. no more complaining.... I'm really down tonight over all this ....
  3. Hey girly, just wanted to send you a note of love and care -- thinking of YOU today during such difficult times in your life. I pray you be uplifted today. What is the BRAVO btw ?
  4. Hi - I do believe a heart rate to atleast 110 at a 30 point supine increase along with symptoms is important with a true diagnosis of POTS. If you look up "tachycardia" it by definition means a heart rate over 100 BPM so if you want to get technical you could look for a 30 point increase from supine heart rate that reaches over 100 bpm (thus the postural TACHYCARDIA). I went from supine rates in the 80s and instantly upon upright tilt hit 180-200. The longer I stood the higher it went. Dr low at mayo was shocked with my heart rate as it was literally off his charts. The bp showed low but not hypotensice and wherever my heart rate increased more, it showed my bp starting to drop off (so heart rate was trying to compensate at a very extreme rates). Florid used to be defined at 150 or greater within 5 minutes. They revised this from what I have found online. Most potsys I talk to are in that 130-150 range for standing rates. I have met only a handful with rates in the 180-200 range....especially within literally 20 seconds of upright tilt (and sustained rates - not a lag phase or drop off). BOTH though have similar symptoms and symptom wise one doesn't seem worse off than the other when just comparing notes. Dr low seemed quite impressed though and aside from the obvious I was wondering why (hence my poll here on HR's).
  5. I was told that florid means a heart rate increase to at least 120 within 2 minutes of standing. Just wondering if there was significance with it as I think most of us hit that number that quickly. .....
  6. Interested with not only symptoms in us POTSY's, but the actual numbers. The Mayo Neurologist seemed to be shocked at my standing heart rate and I was wondering why as I'm sure he sees many POTS patients .....
  7. Who here has been told they have "florid POTS"?
  8. I was prescribed these for my nausea issues. they definitely help with GI symptoms but they made me feel very looped out. when i used them, I had to spend all day on the couch because getting up would make me feel kind of dizzy.... also gave me a really bad dry mouth ..... but if you have significant GI distress, a little dry mouth and dizziness is nothing!
  9. Yeah that was the next test mayo wanted to do on me but they said it wouldn't change much for course of treatment so I didn't have it. I heard too many horror stories about it so I passed!!! They did tell me that they would be able to determine if my gastroparesis and small bowel dysmotility was due to a myopathic or neuropathic process but the test just sounded too horrible to put myself through! Kudos to you guys n gals who have had the manometry! Eeekk!!
  10. hmmm, that's not the one I had ..... I had to take this pill and then wait an hour ..... then they made me eat the radioactive egg breakfast..... then they took nuclear pictures of my stomach (gastric emptying) for 6 hours ..... along with the pictures of my stomach, they took images of my small intestine up to 6 hours .... then i had to go back the next morning for another picture ('m guessing at that point, the pic was of the intestines)....then the third day, I went back for another picture .......... my small intestine at the 6 hour mark showed only 1% emptied (they told me 48-50% at the 6 hour mark should have passed out of the small intestine) .......
  11. Just wondering if anyone here had the GI capsule nuclear test (not sure what they call it) to check motility in the small and large intestine? If so, I'd love to compare notes ....
  12. LOL, thanks for sharing your stories!! Glad I'm not the only one who finds their medical records entertaining! another story -- SOMEHOW a doctor I saw down in boston thought I "smoked pipes" -- I kid you not, this was in my record! I was LIVID. the record ended up getting sent to my EP doc and so I emailed my EP and told him "by the way, I HAVE POTS, I don't SMOKE it. LOL! He got a HUGE KICK out of that and then said "I believe you, but with all you've been through, I wouldn't hold it against you if you did"... HA HA. Brye -- EVERY time I end up in the E.R., the ER physician always writes in my chart "POTTS SYNDROME" -- ugh! like you said, two totally different things! mighty mouse -- SOOOO funny!!! macks mom -- nevermind explaining the baby process to your 13 year old son (he'd GET IT), the REAL dilemma is how do you explain to the insurance company that male's cannot get pregnant? they WOULDN'T get it. LOL! AH the joy's of insurance companies! firewatcher - I know! there have been time I haven't been all that pleasant and still I am referenced on PAPER as pleasant. lol. it's because it's a written document, doesn't really make the doctor look like a nice guy if he refers to his patient as a *************** fill in the blank but for sure they are thinking ****************** . i have heard some doctor's chew a patient out to other physicians or techs/nurses after the patient has left.... then they sit down to dictate their exam on the patient AND ..... "This is an EXTREMELY pleasant patient......." LOL.
  13. Just got my medical records from mayo : two funny things..... the first I always get a kick out of because it is the very generic statement most doctor's who are evaluating a patient start off saying (mind you this was after the WRITTEN and dictated physical exam which included my resting heart rate of 170) -- "This is a pleasant, HEALTHY appearing 28 year old woman IN NO APPARENT DISTRESS" -- "healthy" and "no distress" but with a resting heart rate of 170.... LOL..... I have read that about a million times over the years and always laugh when I read it! I didn't know that a resting heart rate of 170 was "healthy". LOL!!! The other statement off of my mayo report was that "because of this patient's symptoms, she went out on disability on December 29, 2010 .....2010!!!!!!!!!! LOL, ummmmmmmm, we haven't gotten there yet!!! hahaha. just thought i'd give you guys and gals a laugh. ;o)
  14. wow! I just picked up on the 5000 NE during your tilt!! i'd second and third what others have said to check for pheo again ..... especially with a number like that! I think mine was only like 700 ..... WOW. so sorry you're going through all this....
  15. are you sure your cardiologist classified you as a "heart failure" patient? Generally there are strict guidelines for diagnosing heart failure. Heart failure basically means that the heart as a whole is not an efficient pump (The "pump" is what is termed EF - or ejection fraction -- which represents the hearts "squeezing" capacity. anything under 40% for an EF can be classified as heart failure or cardiomyopathy. normal EF is generally between 55-70%. from your description, it sounds like you have left ventricular hypertrophy (??) which can definitely alter heart function. did they say what your "EF" (ejection fraction) was ?
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