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cardiactec

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Everything posted by cardiactec

  1. I criminal speed every day, just take my pulse! ;o)
  2. 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?
  3. 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....
  4. 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 sort of sinus node modification whatsoever because it has been proven that ANY sinus node modification/ablation in a patient with known POTS is detrimental and NOT helpful in any way for POTS symptoms relief. My EP study and ablation was done on New Years Eve 2007 and though it most definitely has helped with the symptoms I was getting from the SVT, I am still left with the lovely sinus POTSY rates of 170-200..... yuck. I would proceed with the EP study if medications have not helped to silence it or if it is happening on a frequent basis and is life altering. Good luck to you. Let us know how things go.. Angela. P.S. In my experience with the EP study, they sedated me enough so that I still was semi-aware of what was going on ..... I will admit, I did feel pain when they started ablating and it wasn't pleasant - however, you are pretty loopy from versed and some other "conscious sedation" meds that they give, that it makes it a little more tolerable. It only hurt while they were doing it. After the study, no chest pain at all ...it had subsided. P.P.S -- I knew i had POTS going into the EP study and ablation and I am still glad I had my EP ..... I know there are some on here that say if they had known they had pots, they wouldn't have had an EP, but I guess everyone is different. I was pretty symptomatic with my SVT, most likely because my rates were 260..... driving and having one of these spells was getting pretty dangerous, so I really wanted it taken care of ..... and I'm glad I did ...
  5. firewatcher -- will insurance pay ya think??
  6. 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?
  7. 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 most certainly will be looking into this as fatigue has also been a huge issue for me (i'd love to start jogging!) ....... Interesting about what Dr.Cohen said. I was told by Dr.Low and another neuro at mayo that people with POTS don't commonly have dysmotility findings when they screen them - a lot of people here seem to have problems with dysmotility so it just makes me wonder if these doctor's are really barking up the wrong tree with us potsies or if they are just really misinformed (ie: they haven't screened enough POTS patient's to know just HOW MANY pots patients present with dysmotility issues) ....... I like the conversation i posted here between a patient and doctor (Q and A) .......quote, "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 energy deficiency" --- .....so i guess it really does make you wonder if motility issues are a separate entity and not truly related to a primary dysautonomia but more of a mito or a "cellular energy decifiency" and if so, would/does the heart (tachy,etc) become effected just as much.....
  8. 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 energy deficiency. The explanation for cardiac arrythmias may be similar - not due to abnormal signals from autonomic controls in the brain stem but rather aberrant electrical generation/conduction in energy-poor areas. Other symptoms that have not been explained include: 1) Sensitivity to heat in that they 'wilt' in hot weather -> I do not think we know if there is an inability to regulate body temperature or sweat. Dehydration may play a role in symptom exacerbation. 2) Blue lips/extremities -> typically not causing discomfort. I have not seen this but have had parents report it. There are biopsy proven reports of neuropathy in mito patients - but I do not know if this would explain episodic color changes in the patients (especially with rapid resolution of the symptom). 3) Postural tachycardia or orthostatic/positional hypotension -> this is a common complaint in many individuals (some with abnormal autonomic testing on the tilt-table) - not just mitochondrial patients and we do not know if this is more common in DNA or biopsy proven mito patients. Answered by: Sumit Parikh, MD
  9. 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 diagnosed with mito disease? i am already in correspondence with a doc in boston so i am hoping to get more conclusive, definitive answers even though i know mito (if that is the issue) doesn't have good treatment options....... i doubt i have MNGIE, some of it just doesn't fit ....i HOPE i don't have it, poor prognosis.... thanks for your response to this post ....
  10. 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 carnitine deficiency has very low levels of carnitine in the blood due to a faulty carnitine transporter which prevents carnitine from getting into the cells where it is needed. The secondary form of carntine deficiency can arise secondary to metalobic disorders in the mitochondria. Blockage of metabolic pathways in the mitochondria leads to a build-up of acyl compounds. Infants are particularly susceptible to carnitine depletion, because the demands of tissue accretion associated with rapid growth exceed the ability of the infant to synthesize carnitine.
  11. 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 aren't as effective or aren't at all. My hunch? I don't think I have the MNGIE thing. Symptoms of it sound pretty severe (mine are not) and there are some symptoms that I do not have (I do believe I have had a brain MRI a long time ago and there was nothing noted about loss of white matter) the focus really seemed to be on the abnormal carnitine value, which then led him into the discussion of MNGIE based off of their findings on me of small bowel dysmotility, gastroparesis, diverticulosis (which is common in normal population but i've been told generally not before the age of 40), a "non-specific" patchy something or other on my feet neuropathy (which i guess with MNGIE, there are a lot of problems with the hands/feet/ re neuropathy), and a "droopy eye" that I have ............. kind of odd to classify or try to anyway all of this into ONE problem as MANY of the other issues I have don't seem to "fit" with MNGIE ......But he seemed to really focus on it, spent 30 minutes talking to me about it at 7 o'clock at night. .... i AM very good friends with a pedi cardiologist and I filled him in on the above info and he said he sees patients with mito disease that have abnormal carnitine values and has seen other patients with abnormal carnitine values for other unknown reasons. he said abnormal carnitine can most definitely effect cardiac function but generally it presents as a cardiomyopathy and/or secondary arrrhythmia's .... i asked him about supplement for GI function and he said a lot of people do try it, but he said the majority of supplements are excreted through the urine and generally aren't very effective because of it being excreted ...... my pedi cardio friend though has put patient's on carnitine who have abnormal values of carnitine and has seen some of them rebound of cardiomyopathy's and arrhythmia issues .... i would suggest those with dysmotility to ask your doctor about getting your carnitine levels checked ..... it would be interesting to compare notes ...... who knows, maybe WE will crack the case! tearose, good luck with the prep. blah!!! i feel your pain! remember THAT all too well, X3!! keep us posted with what they find out .... Julie, I am the lucky anomaly in my family!! no one else has ANY of this .... closest thing was my mom's mom and she had significant GI disturbance but they blamed it all on her lupus (this was a good 26 years ago though and i'm sure they didn't know much about mito disease then because they don't even know a lot about them TODAY! LOL).... obviously this isn't black and white! hahaha! if all this was, none of us would be on this forum! ;o)
  12. 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 primarily a GI issue (which i have) but i asked him if findings of POTS or autonomic dysfunction could be seen with this and he didn't seem to think so but in the same breath said "but we don't even know that much about POTS to really say whether or not this can be a feature"... i would think with ANY mitochondrial disease, there could or would be disruption of the autonomic nervous system as the mitochondria are the "powerhouse" of the cell's and therefore seemingly i believe could or would involve ANS disturbances ..... anyone have this? been checked for it? know anything about carnitine levels specifically? he didn't run DNA specific tests for this, but whatever the broad view screen is for mito is what he did (blood test) and showed abnormality ..... thanks for any input, advise, guidance ... Angela.
  13. 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)
  14. 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?
  15. 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 doesn't know because of his profession or if I should be concerned? What do you all think?
  16. 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!
  17. 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 WAS a link, doctor's would have POTS and have it to more of an extreme than us (as they spend far more time in medical facilities than we would/do as RN's, etc). ...
  18. 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?
  19. Just wondering who here has been diagnosed with small bowel dysmotility and what do doctors say/recommend if anything for it?
  20. 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 get lawyers involved etc .........to my surprise and with much thankfulness in the situation, I was approved for SSDI two weeks ago (only took 2 months). I am not sure how SSDI is handled from state to state, if it is "easier" in some states compared to others (i am in maine), but just provide as much documentation as possible. I hope things work out for you. Angela.
  21. 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.
  22. this is VERY interesting. thanks for sharing.
  23. Angela, Thanks for sharing your experience with me. As for diagnostic testing, I wouldn't be looking for that anyway as I think Mayo Clinic covered all the ground you can possibly cover for tests! Treatment options were a huge frown on in my experience with mayo and it is not good to have heart rates like mine almost ALL the time. As for the three year wait list, I am hoping I can get in sooner as I have been in close correspondence with a doctor I met four years ago who is good friends of Blair Grubb and he just wrote Grubb a letter explaining the urgency of my situation and questioning my POTS diagnosis altogether as my heart rates, they tell me, are way out of ballpark for most POTSIES. As an EP who specializes in POTS, Grubb might just have better answers and treatments for me coming from more of a cardiac perspective and not JUST neuro.
  24. I am trying to find a doctor who can be HELPFUL to my very excessive heart rates. Mayo didn't help. I have heard many good things about Blair Grubb. What are YOUR experiences with him?
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