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Everything posted by cardiactec

  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 ?
  16. This is not something I have noticed until recently but if I am standing more than 10 minutes my calves get sooooooo achy, crampy, and painful..... Do any of you experience this? if so, aside from elevating your legs, what is helpful to combat this horrible feeling?
  17. what he's testing you for sounds like something called "pheochromocytoma" (a tumor on the adrenal gland). I was checked for this a few times, especially when they first were trying to figure out what was going on. they were concerned also that i had this type of tumor as my heart rates standing would be in the 200 range. my 24 hour urinalysis was negative for pheochromocytoma and no one really knows what is causing my problems (except for the confirmed diagnoses of POTS) .... i hope you get some answers. p.s. don't worry too much over this condition as it is exceptionally rare and even in the unlikely event that you did have this, in the majority of cases it is a benign tumor and not malignant. take care and keep us posted.
  18. Hey Julie -- I wanted to make the dysautonomia theme more "pronounced" by putting some more dysautonomia signs/pictures in the video but I did manage to get a couple in there. At the beginning "see the world, through my eyes : Dysautonomia Awareness" and then at the very end "Fighting the unseen battles" with the "dysautonomia awareness ribbon. I had so many other pictures that I would have liked to include but sinking choreography (images and the song) was tight. ..... Please do share the video with others, specifically anyone that is in need of encouragement (I think that would be everyone on the face of the planet!)....you have a HUGE task ahead of you! haha. glad you enjoyed the video. )
  19. I am glad you all found just as much encouragement as I have with this video. It is funny - my intentions initially for making this video stemmed from an "anger" moment of "I'll get the point across" toward someone who, in short, just wasn't educated in dysautonomia and the physical difficulties that accompany this condition. Isn't it interesting how God intervenes in our lives to take over His rightful place as DIRECTOR and how too often we try to take on that roll when instead we are FAR better off being the directED? Little did I know the finished result of this video wouldn't JUST be an educational tool but a tool to encourage myself and others living with dysautonomia. God, DIRECTOR, had something else in mind with this video. He wanted to bless, uplift, and love on all of His children, you and me. So, Thank HIM for this video - I gave up my position as ''video DIRECTOR'' the first time I watched this video through -- and I was encouraged, uplifted, I cried many tears, hope stirred in my heart again, and life renewed in my soul.... My response to the video was (and still is) the same as all of yours. It is amazing what God can do in and through us .... and even what MORE He can do when we actively and deliberately surrender our everything to Him. Be blessed.
  20. Glad you all like it. It really has been something for me to pull out and watch -- sometimes repeatedly when I'm having a really bad dysauto day -- allows me to reflect and remember all of the positive's in my life. I gave a copy of this video to all my doctor's. It was the best way I knew how to say "thank you" to those who have faithfully stuck by me since being diagnosed 10 years ago and yes, even as the song goes, through it all. The singer is Darlene Zschech (doubt i spelled that right). She is part of one of my favorite groups called "Hillsong". That particular song is off of their cd entitled "Blessed". Great music to listen to.
  21. I thought I'd share this video with you all. It is a video I made about my life with dysautonomia. It has a spiritual theme to it and that theme has been my anchor - THROUGH IT ALL. It is also a thank you to some of the doctor's that have been involved in my care. Just wanted to encourage you all with this -- we can make it! keep fighting, we are more than conquerer's.
  22. Bellamia -- The Lord is our ever present help in time of need. He is touched with the feelings of our infirmities. I am so sorry for your loss. One day you will be reunited with your family as a WHOLE and WHOLE yourself. No more sickness, disease, but we will walk in the newness and wholeness of our loving and precious Maker. Run into the open arms of your Heavenly Father today, don't say a word, you just let Him hold you and you cry in your daddy's arms. He won't let you go, ever. You are His precious, beautiful daughter and He loves you so very much. ''Weep with those who weep''. I am saddened with you, for you and pray a touch from the Lord today upon you and your loved ones in your time of loss. Praying for you. Angela.
  23. as an addendum here -- anyone on the minera IUD? my GYN suggested it to keep the endo at bay ..... she did say it might be more uncomfortable for me to get it as i have never had children and so my uterus couldn't accommodate it as well ....but .... I had it put in during my lap on march 20th and I am still bleeding from it! my GYN said it could take up to 12 weeks for bleeding to subside but my friend just had HERS pulled after bleeding for a year straight! NOT helpful to bleed that much when you have POTS!
  24. maybe they want to see how well managed you are on your current medication regimen ? another issue could be (I know this was the case with my trip out to mayo clinic - MN from Maine) that they could not "consent" to giving permission to go off meds until I was actually physically there (it's a liability thing) - they told me to ask my local physician/cardiologist about stopping meds before going out there.... Mayo Clinic had me stay on my metoprolol (150 mg's) even after I got out there, but i just figured it was because it didn't make a difference (in my situation) with or without meds - the numbers unfortunately for HR are still the same. Hmmm, interesting. Did you ask them why they wanted you to remain on meds?
  25. Just wondering. Did this poll before, but I know there are newbies on here so i'm bringing the question back. I have had about 6 ECHO's since 2001 and all of them have shown posterior mitral valve prolapse, but a most recent echo (and more detailed via 3D imaging) revealed bileaflet mitral valve prolapse. thankfully, i don't have much regurg with it. I know some doctor's think that this has nothing to do with dysautonomia (in regard a "finding" to suggest dysautonomia) while others think there is a higher prevalence of MVP to people who have other symptoms of ANS dysfunction. There is a link of MVP to connective tissue problems (ehlers danlos, marfans) which makes sense as collagenous fibers are faulty, which make up the heart valve structure BUT that said, being a cardiac tech, I have done cardiac echos on patients who do not have any type of connective tissue problem (that they know of) and who do not have any symptoms of ANS dysfunction. There have been a few though who have either connective tissue disease and/or ANS dysfunction symptoms along with a true diagnosis of MVP. So, do you have MVP?
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