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Everything posted by cardiactec

  1. Almost every night I experience this .... As julie said, sounds like motility issues ..... i have gastroparesis and small bowel dysmotility .... have you had a gastric emptying test? or small/large bowel transit time?
  2. I've had three lap's for endometriosis. my GYN says she has 5 endo patient's that have ehlers danlos III (hypermobility) and thinks there is a link, although none of those other patients (except me) have POTS....
  3. I have had a diagnosis of POTS for 10 years now with sinus tachy rates up in the 190 range and about 6 years ago I started getting a DIFFERENT feeling from just my regular POTSY feeling.... I mentioned it to my EP and finally on an event monitor they caught an SVT (ectopic atrial tachycardia) at 260 BPM. My EP here in Maine corresponded with Mayo Clinic and Boston before proceeding with my EP study/ablation just to make sure it was "okay" given my POTS diagnosis from years earlier.... Both Mayo and Boston told my EP that is was fine to proceed with an SVT ablation but to stay away from any so
  4. firewatcher -- will insurance pay ya think??
  5. Just wondering if anyone here have purchased this to try and help improve circulation, etc? http://www.renuall.com/air-o-sage.html If anyone has, does it help with symptoms at all?
  6. spaceorca - did your son have any abrnormal finding in the baseline screen (like with carnitine or lactic acid levels)? megan - thanks so much for your response. i wouldnt second ana's question to you -- did you have the carnitine levels checked before going through DNA testing? did they check for other types of mito ? is carnitine cheap or an expensive purchase? did you have the muscle biopsy? if so, what did they conclude? is that done under local or general anesthesia? (sorry for bombarding you with so many questions!!) ......i am so happy to hear the carnitine supplement has helped you. i
  7. another interesting read: Q: Could you please provide some information about dysautonomia? A: In regards to dysautonomia - some mito patients seem to have several symptoms where dysautonomia has been invoked as a possible etiology - but not proven by autonomic testing. The symptom that might be most linked to dysautonomia would be dysmotility since the gut is controlled by the autonomic nervous system. The dilemma with this explanation is that the gut also has its own internal nervous system and some of the motility issues may be due to patches of abnormal motility due to a true cellular ener
  8. Hey todd, thanks for your response .... yeah i have gastroparesis with a transit of 180 hours and at four hours, still had 40% hanging out....mayo just recently diagnosed small bowel dysmotility, i have had some problems over the past few months with swallowing (not like the feeling you get in your esophagus like in your chest area where something feels "stuck" but more up at the back of my throat/first portion of the esophagus)....i haven't had any test to determine whether i have esophageal motility problems, have you? what was your muscle biopsy for? part of mito testing? have you been dia
  9. interesting info I found on carnitine : Carnitine deficiency: There are two types of carnitine deficiency, primary and secondary. In both primary and secondary carnintine deficiencies, increased dietary intake and supplements of carnitine can be beneficial. Although the exact mechanism is unknown, it is thought that flooding the body with high concentrations of carnitine assures that some carnitine are able to get into the cells. Carnitine deficiency occurs as a primary genetic defect of carnitine transport and secondary to a variety of genetic and acquired disorders. A person with primary car
  10. It was odd that he didn't want to pursue further testing (MRI,etc) of this but more of less just said "keep it on the radar" and if things progress, come back to Mayo (ummmm yeah right! 16,000$ later) or go to Boston. I am wondering why, since they already have my DNA sample from vascular eds testing, they don't just run the mito tests on it? It is odd, almost like doctor's wait until things are REALLY in the crapper to REALLY investigate. that is a back seat approach in my book and serves no benefit to the patient as typically, if a patient is in the crapper, many therapy's and treatment's
  11. Got a call from mayo clinic's geneticist that i saw when i was out there a few weeks ago ...... he did testing on me for vascular form ehler's danlos which thankfully came back normal. however he did a baseline screen for mitochondrial disease, specifically looking at "carnitine" and he said it came back abnormal. he raised suspicion of something called MNGIE disease, which i guess is extremely rare and has a very poor prognosis. though i have some of the signs and symptoms, i do not have them all but he told me i should "keep this on the radar" if things progress. it sounds like this is prima
  12. not sure ..... i am good friends with a few different doctor's (not my OWN doctor's) and they have all had the same cell phone numbers for years ..... I do appreciate the advise here. It does offer a different perspective than from what some of my friends have suggested (one made a comment about the surgeon being a "psycho path killer" -- a little extreme and i think probably biased in that the guy that made the comment wants to date me! lol)
  13. Thanks Julie. I will indeed give it a go. To all who have posted: have any of your GI drs told you that there is a chance for your dysmotility progressing?
  14. do you think it is odd that someone changes their telephone number TWICE within a month? I went out on a date with this guy a couple weeks ago. we met a month ago and within the first week of meeting/talking to him he told me he had to change his cell phone number (no reason given). a few days ago he changed his number again - reason this time? he kept getting calls from AZ. Do you think this is odd? I am wondering if this is a HUGE red flag that I should be paying attention to ?? the guy is a trauma surgeon, so I don't know if it is possible that he is just getting random calls from people he
  15. mine is acting up a bit -- mostly in the middle of the night or morning .... haven't tried the miralax but will be getting some!
  16. good point firewatcher .... it is odd though, i have met LITERALLY so so so many people (both in trips out to mayo, in person and here on the forum or other places online) that are in the medical field. most RN's .... I myself am in cardiology and though I get suspicious that maybe there is some sort of pollutant or cleaning agent or SOMETHING within medical facilities that we'd come in contact with that would CAUSE POTS, MY POTS in particular started long long long before I was ever in cardiology - actually started when I was in diapers (well, the GI part of it anyway!) .....I guess if there
  17. Interesting that it seems like sooooooooooooooo many people I meet online that have POTS or some form of dysautonomia work in the medical field .... just curious, how many here work or have worked in the medical field?
  18. Just wondering who here has been diagnosed with small bowel dysmotility and what do doctors say/recommend if anything for it?
  19. Hi Kits, Your story sounds like mine. I was working in cardiology for six years, POTS has gotten worse over the past year, like you been to mayo twice with no new treatment options and treatments i've tried haven't worked, went out on short term disability 3 months ago and now moving into long term (hoping it gets approved) ..... I applied for SSDI at the end of january when i went out on short term disability. I was concerned about getting approved as i have heard such horrible stories from people with POTS trying to get on SSDI and it taking them months or even years, being denied, having to
  20. Mine was still climbing up to the 180 range and that was on 150 mgs of beta. I've been told I am the anomaly for POTS though so might want to compare notes with others!! Hope you just forgot to take your meds! Take care.
  21. yep, I made my bed last night (not that this is even "true" exercise) and felt a little short winded and shaky after, I took my pulse - 150 and that's on a hefty dose of beta.... .....I ride my bike flat surfaced to get some exercise and both during and after I feel very stimulated and my heart goes nuts, along with feeling nauseous and shaky. not fun. feels like you're still exercising even hours after you have stopped.... take care. hope you get some answers/help. cardiactec.
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