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cardiactec

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Everything posted by cardiactec

  1. first off, I LOVE LOVE LOVE my cardiologist. I think he is wonderful. It is awful however knowing that there isnt much left for him to offer for help...........saw him in the office today as the past three days i've been really short winded. my pulse in his office was 190 SITTING ON MEDS (this was sinus tachy/POTS/not SVT). He about went through the roof as my HR's had been doing pretty good. lol, he tossed his stethascope at me and told me to listen to my heart because initially he took my pulse wrong (he said it was so thready, that he thought my pulse was around 120). i took his scope, listened, and he said "I think my numbers were wrong, you're more like 190" .............. EVEN WITH my stomach issues, today and yesterday have been ok with nausea and i have been able to take in foods/fluids, so i was shocked to see my rates in the 190's...... You know you're a rarity when you go see your cardiologist, he takes your pulse to find it at 190, and tells you "see you in three months". I just hope my HR isnt like that the next day my GI surgery is scheduled, they won't TOUCH me! the cardio mentioned trying round four with florinef, midodrine, etc basically all the meds i've tried that havent helped but then, as i was thinking, he said "but why try them again when they didnt help the first three times trying them......." he also didnt want to increase my beta blocker because my systolic pressure sitting was 100 and he said even though my pressure wasnt that low, he didnt want to drop it out with more BB, especially when it's hard to keep me upright anyway with a pressure of 100 systolic and a heart rate of 190! yikes.
  2. ditto to what others have said. as flop mentioned, a heart that is very tachycardic and especially for prolonged periods, can both cause T wave abnormality, either flattening or inverted (generally these are nonspecific whereas ST depression is indicative more of heart ischemia (lack of oxygenated blood) AND also slight abnormalities in cardiac enzyme draws. I have had both T wave flattening and T wave inversion during periods of high tachycardia, but have never had a positive lab. good luck to you. i hope you are feeling better.
  3. So I went and saw the GI surgeon about the neurstimulator for gastroparesis and the malfunctioning issues it was causing.........the first thing he did was turn the device on again and told me to come back in if it started causing all the weird spasms and pain. within four minutes of him turning it back on, and THIS TIME he had set it at a lower frequency/voltage, my whole left abdominal region started spasming. he said he'd never seen this kind of thing happen with one of these devices and had to turn the device off and get on the phone with medtronic (The company that manufactures these devices). ..............he believes for some reason the device to be short circuiting and creating electrical potentials in parts of my abdominal muscle, causing the twitching and pain.............................so the device was turned off again and i'm now in limbo waiting to hear back from the GI surgeon, after he talks to medtronic, to see what the next step is.............the GI surgeon told me he suspects another surgery most likely is in order to fix the issue. argh.
  4. Hi there, Prolonged QT intervals can be congenital/genetic or acquired. acquired meaning things like certain medications may be a contributing factor for long QT. Electrolyte imbalances can cause QT prolongation. what was your daughter's heart rate and QT measured on ECG?
  5. I was initially told, WAY WAY back, that I had IBS when my biggest issue of all (which still remains my biggest issue) was nausea but finally, two years ago, after having a nuclear gastric emptying study, they found the real culprit to my nausea being gastroparesis. I have not been tested for lower GI/dysmotility issues, but I think I probably have dysmotility problems throughout my whole GI system and not just my stomach.
  6. Hey Rachel and everyone else, the plan is to meet with the GI surgeon tomorrow morning. I am not sure if he will turn the device back on to give it another trial run or if his plan will be to just skip the latter, go back in for surgery #2 to replace the leads and reposition the leads. As for how I'm feeling, well, no pain now that the device has been off for a week, but my tummy is sick sick sick - pretty nauseous. ........ I really do believe this device will work for me once they fix it! Will keep you all posted. thanks for your continued thought and prayer~!
  7. Anyone here take beta blockers on an "as needed" basis?
  8. I second ajw. though cardiomyopathy can develop from very high heart rates that are sustained for years (generally this includes, according to my cardiologist, heart rates that are 100 + during sleep, as well as tachycardic rates sustained throughout the day), the majority of POTS population do not have rates that are sustained enough, or high enough at that, to cause damage to the heart. my heart rates, i was told, were 200 + when they first saw it on holter 6 years ago, but during sleeping periods, my rates were normal, and also somewhat normal when sitting during the day. even so though, my heart function (EF) was 45% when they first found my rates to be exceptionally high. normal EF is above 50%. after getting on meds, my EF is now 60%. It definitely is possible to put wear and tear on the heart with high heart rates sustained over a period of years, but i would think it a rarity in the POTS population for reasons mentioned above . I also think in my situation, i had arrhythmias that were not POTS (sinus tach), thus my rates were a heck of a lot higher than POTS rates (sinus tachy) and more sustained than my POTS (sins tach), which i think also contributed in my situation to my heart function being down. cameron, what are the docs plan for your particular situation. i understand your stubbornness, i really do. nobody wants to be weighed down with illness, nobody wants to be limited in activities or employment because of illness. i see it more as eagerness and desire to have a fulfilled life than of stubbornness. BUT, as you have already stated, your hesitation to want to see the problems and your drive to lead a normal life, in a way, has somewhat harmed you. I still don't think you are to blame for this. it is tough to accept the reality of hardship and then titrating life activities because of such hardships and limitations. i wish the best for you cameron, and hope they can settle your cardiac and pots issues down, and that you still will enjoy life, even with your limitations. take care. cardiactec.
  9. Hey all, this is a pretty informative video about gastroparesis. to play, go to the right hand side of the site. At around 7 mins 40 seconds into the video the doctor mentions specifically postural orthostatic tachycardia syndrome as one of the many culprits or factors classified under autonomic neuropathy for gastroparesis. I was shocked to hear him specifically mention POTS. glad he is aware of both POTS and the combo connection of POTS patients who also have gastroparesis. enjoy. http://videos.med.wisc.edu/videoInfo.php?videoid=2221
  10. I get bloating from gastroparesis. there are meds for it, or specifically to help empty the stomach - these meds are called prokinetics and help to move food along the GI tract/stomach if your problem is with motility issues such as gastroparesis......some prokinetics include domperidone, reglan (a type of anti-emetic, which also has prokinetic properties), erythromycin (type of antibiotic), and cisapride. Depending on the cause of your "stomach swelling", these may or may not help. Have you talked to your doctor about it? Hope you start feeling better soon.
  11. cameron, how fast were your heart rates and how consistently high were they?
  12. I have POTS, along with supraventricular tachycardia (specifically ectopic atrial tachycardia) which I had ablated and also nonsustained ventricular tachycardia. I also have tricuspid and mitral valve prolapse. I also have a PFO (little trivial hole between the top two chambers of the heart - the atria). the PFO isn't an issue and isnt necessarily a "true" defect like an ASD or VSD. My heart function (EF) was down when the tachy issues were first noted and they thought my function being down was due to undiagnosed tachy issues for years, but now, having been on antiarrhythmics for years, my heart function is normal.
  13. hey all, writing a quick note to let you know that i am out of the hospital and doing a bit better. sheridan, thanks for writing. i will chat with you via email. to all here, thanks for the prayers. i ended up thankfully getting the device shut off in the ER which relieved about 3/4 of my pain issues. all in all, it looks like i'll have to have another surgery to readjust/reposition the device since it appears on "CT" to be "too high" in the stomach. argh. frustrating journey, but i am still believing this will be of help as soon as they can "fine tune" everything.. thanks to you all for your loving support.
  14. hi, thanks for your prayers and best wishes. unfortunately things are not going well. i am having horrible spasms and pain from the device, we think, and my doctor has conveniently left town after i spent four days trying to get in to see him so he could shut this thing off to see if the pacer is the cause of all the pain/spasms. i informed my electrophysiologist of all this since he puts in cardiac pacers by medtronic thinking that maybe HE had a way to shut it off, and he didnt. BUT he ended up calling the GI office this morning and reaming them out for the GI surgeon not taking care of this yesterday by shutting it off before he leaving town and leaving me with no other option than to go be admitted into the hospital until thursday until he, the only one in this state who can manipulate the device, is back to shut this off! i met with two GI surgeon's the first trip into the ER who said that nobody else could do anything about it except the GI doc who implanted it and that they believe the device to be malfunctioning as they have never seen this device contract the whole abdominal cavity and cause so much pain. they have me on dilaudid, similar to morphine, and it still isnt cutting the pain. just got off the phone with the oncall GI surgeon who is covering for my surgeon and he said my options were to be admitted into the hospital where my pain levels can be managed better or to wait it out until thursday! my cardio was FLIPPING OUT over this. i am on my way into the hospital to sit around, pick my nose for five days until the doctor comes back to shut this off. unbelievable. on a more positive note, my dad just got off the phone with medtronic, the company who makes these devices and they said that there was a rep from their company that may be able to meet me over in the ER and that they could turn this off. i am so frustrated, tired, in pain, tired, tired, tired. please keep me in thought and prayer. thanks gals and guys. a sick and frustrated cardiactec.
  15. Hi all, Just thought I'd let you all know that I am having my stomach "pacemaker" implanted tomorrow for my gastroparesis. Keep your fingers crossed, hopefully this helps. I will let you all know how it goes/results/etc. -cardiactec.
  16. Thank you all so very much for your care and concern.....I havent been around much, been too ill. Just wanted you all to know that, as I really have been meaning to get back to some emails some of you have sent me....... I am scheduled for surgery (the neurostimulator) for the gastroparesis in hope that it helps. I have been in and out of the ER several times over the past month because of complications of the gastroparesis...........on top of that, the arrhythmia's are much worse due to dehydration status....... I am no longer at the hospital I was working at. Too emotionally painful to remain there knowing that they were going to fire me because of my disability. My plan right now is to take care of myself, get help from the state, and get well. I will keep you all posted from here on out. Thank you so much for your messages of concern. You all are wonderful.
  17. PSVT can lower BP, especially if the heart rate is very high. hypotensive states can definitely cause a person to vomit. has she worn a holter or event monitor during one of these episodes?
  18. hey ajw, thanks for your message. Yes, they have ruled out any meds I am taking to be the cause of all this. Actually, I have had these symptoms *mostly nausea8 before I was ever diagnosed via gastric emptying study and before i was ever on any meds at all. I dont have GERD so not an issue there. never heard of abdominal migranes? how is that diagnosed? what is it? yes, tried erythromycin, reglan, compazine, tigan, zofran, promethazine, domperidone, and other ones i cannot remember. it is so wierd - get this - so two weeks had passed and i was in *and still am* in a state of misery. thursday night it was aweful and i was thinking how the heck i was going to be able to deal with this and trying to think of some way SOME thing could help and just really wanted a sign of some sort............the next day i went into work feeling miserable. i had this patient, 56 year old gentlemen, to do an adenosine stress test on.....he started telling me about his history, med problems, and said he has gastroparesis which was by far the worst thing out of all his med problems. my jaw hit the floor. and THEN if THAT wasnt enough confirmation of someone to help me in my decision making in what to do and also to have someone understand where i was coming from, he went on to say that he had the gastric pacer put in a year ago and it literally saved his life! my jaw hit the floor again. kinda cool. i take that as confirmation perhaps to try the GI pacer as all else has failed and i have been even more symptomatic lately. I thought about the bezoar too.............my WBC were up the last ER visit......wonder if this is a possibility. thanks again for your message..........
  19. Two questions to ask : 1. has anyone here gone through with the enterra therapy procedure for gastroparesis? (the neurstimulator for the stomach). I am highly considering it as I have made a fourth ER trip within two weeks because of horrific nausea and vomiting from gastroparesis. I have tried all the pro motiliy meds out there along with mostly all the anti emetics i can think of and nothing really helps........ 2. there is a member here who lives in maine who worked at the hospital that i am having troubles with currently (trying to keep my job, trying not to get fired from having a disability). I know you had troubles as well, and if i remember correctly had gotten fired from this hospital because of passing out.............? if you are out there, please please get back to me via private message. thanks.
  20. I take toprol 100 mg's a day and definitely couldnt live without it. everyone is different though, and there are many etiologies behind dysautonomia, so it is no surprise that some people can tolerate certain meds, while others cannot.
  21. thanks for your words of encouragement. doing a tad bit better today... kind of feel bad for writing this to him.....just a major vent out session. hopefully he doesnt think i'm nuts! i am hoping that he gets in touch with my GI.......
  22. I am so upset..........been trying to get in to see my GI after being in the ER this past weekend and am getting the run around. the only one who has even attempted to help with all this is my EP doc! I vented to him via email................this is what i wrote.....................************* dont read if having a bad day ******************** ---------------------------> Dying would actually be a relief right about now. I called the GI's office, he's on vacation. the office wont see me until they have the faxed documentation from the ER trip. the hospital hasnt faxed the info and i know that even after they do fax the info, no one in the GI's office will be able to make this better. the GI doc will just pass me off to the next poor soul he can quickly scrounge up - which he already did a year ago -- leading to the heartache journey down to boston for all this all for a run around, pat on the back "eat small meals" lecture, along with some empty promises to call my neuro and cardiologist in consult about future interventions regarding this which guess what -- surprise surprise - never happened. I still can barely eat/drink, my heart is skipping out of control because of it, I cant go to the bathroom without having to manually help myself go as sick as that sounds, I'm tired but I cant sleep because I'm too nauseous and the only one who even has a clue of the WHOLE picture here is my poor EP doctor... The only "up to date" records are your records, the only up to date person is you, why??? --- because my pcp is useless because every time i go to him and mention any of this he always refers everything back to you ..... same with potters office. same with gibbons. the only reason why I told YOU of the eating/drinking issues, dehydration, etc is because I knew no one else would give a darn to AT LEAST try and help the situation. To add icing to the cake, I am being fired from my job in three weeks because of all this and will be without medical insurance. so EVEN IF there was something someone could do to help, I have no medical coverage. Meanwhile I have to force myself into work every day when I feel like death warmed over to try and PROVE the hospital that Im not the complete failure that they think I am behind their reasoning to rid themselves of me. Cant call in sick or it is 100% guaranteed my position gone. I'm not strong, just willing to practically crucify myself for things that most people would deem foolishness - 1. a passion for my career. 2. compassion for MY patients who I probably understand, from a physical/emotional/mental standpoint, better than most. . I am sorry for ever becoming your patient, I really am ...sorry for your sake, not mine.
  23. Oh my, so after my docs appt on friday and with all the IV saline they gave me, I still felt like crud friday night into saturday.......ended up starting in with chest tightness, more nausea, couldnt eat much still, and strange fluttering in my neck/chest.......finally i decided to go into the ER even though i had just seen my EP friday (this was saturday afternoon) ....i was shocked to see my HR in the low 50's when it usually is like 100;s + -- on top of that my ECG was funky and they drew labs and my lytes were in the toilet, especially my potassium, so they ended up giving me both oral K and IV K along with my IV saline hydration...... I wonder if this was caused from not being able to each/drink much for a good 5 days. I had only vomited 2X through the whole week, so i dont think that could have depleted my K. I am wondering if all the bags of IV saline in the EP's office diluted my K ??? It was a rough weekend, and my doc wants me to check in with my GI. only problem with that, even if you've been in the ER with issues is that it takes a lifetime to get in to see GI. stinks. I ended up emailing my EP and telling him all this and he told me he hoped i felt better and that i should definitely follow up with my GI. he is right that i should follow up with GI and not him (even though i had rhythm issues and lyte problems) because the primary cause of all this is GI related and not cardiac....... I dont know where to go with this now........my gastroparesis has NOT been good lately, not at all......i have tried all pro motility meds and to no avail........i have tried the anti emetics, eat them like candy, and i still have problems with horrific nausea.... any advice into all this? thanks gals n guys! cardiactec.
  24. funny you should ask -- my HR has been in the 50's!!!!!! which is nuts for me! usually i am in the 100's +
  25. thanks for all your replies. it is nice to be able to share about some of the great docs out there. i really hope, especially you maxine with your latest troubles with the neuro, that you fall into compassionate hands. i was so overwhelmed at how selfless my EP was, that it was friday evening and i'm sure he was wanting to get home to his family for the weekend, but instead he didnt rush me, didnt tell me to suck it up and get up, but instead cared for me so much as his patient that he literally sacrificed a few hours after closing the office in order to help me. remarkable. i am doing a little better today, though i was surprised with 7 250 ML bags of saline that i was still quite wobbly on my feet and lightheaded - i think my EP was surprised as well because doesnt fluid loading via IV seem to help the majority of people with POTS/orthostatic intolerance? my EP wrote me a script for scopolamine (sp?) for the nausea (it is a patch you put on for motion sickness basically) and i feel more "off" i think with this particular med. any of you tried this for nausea?
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