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Everything posted by WarpedTrekker

  1. I know this is an old thread. Thanks everyone for your insight. I still have issues, when I get up from bed to go to restroom. Then I lay back down, and SpO2 will drop to 89-90% for a minute. I have to either wait and it goes up or start taking some deeper breathes. Then it's normal again. I think I may need to see another dysautonomia doctor. I'm not sure what else it could be, but the symptom started after I had my last DVT/PE.
  2. I'm 47yo, 6'1" 260lbs. I was tested for Orthostatic Hypotension last year in Houston,TX with tilt table, etc, and the doctor said I didn't have it. I've had TWO past DVT's/PE's and now wear compression stockings and take Xarelto daily. If I drive for two hours or sit for awhile, it can sometimes trigger this "muffled" hearing I get when standing. It sounds like my hearing pulses in and out repeatedly, and I feel a little off. It happened today when I got out of my car after a 2 hour drive. I did not have my compression stockings on. Also every night when I go to sleep, I turn on my CPAP
  3. I have not been diagnosed with Dysautonomia so far. Went to a Houston,TX doctor a few months ago, and those tests were normal. But I keep having issues like palpitations and rapid heart rate sometimes, when I sit down for extended periods, and then stand up. Last night, I was on the couch watching TV. I started to get up, and immediately some major hard palpitations started and my heart rate shot up very fast. I have an AFIB condition that is controlled with medicine called Multaq. I thought maybe I was in AFIB so I took out my Kardia ECG device to record my heart rate. It was 145bpm+ . T
  4. Yes tilt table while off of my beta blocker was done. I went to a Dysautonomia doctor in Houston, Texas. Dr. Aziz Shaibani. I was not impressed because he only talked to me a couple minutes then had an assistant do all the tests. And then sent me home to follow up with my cardiologist on the results. Supposedly they found nothing wrong. They did tilt table, sweat test and some other tests. The issue is, my tachycardia doesn't happen every day. Nor do the symptoms. But lately it has been happening more often. When my heart races, it somehow triggers extreme anxiety episodes. On Thanksgiv
  5. I'm 46yo, 6'1", 220lbs, in relative good shape, a little overweight. I'm having recurring symptoms, which I am trying to find out if they are Dysautonomia related. I went to a Dr. Aziz Shaibani in Houston,TX that did some tests and they came back negative I'm on Multaq for AFIB, low dose Bystolic (beta blocker), and Xarelto for past DVT/PE blood clots. I use a CPAP/BIPAP machine for sleep apnea. I was disappointed with Dr. Shaibani since he just had an assistant run the tests and I was in and out of his office in an hour. He never talked to me afterwards. My symptoms..... I usually s
  6. Thanks for the responses. One more thing. Can dysautonomia cause issues where your heart works harder when climbing stairs? I've been noticing that going up one flight of stairs at work causes my heart rate to go up to 130-140bpm and I get palpitations. I thought this was caused by Lamictal that I was taking at one time but I am now off that medicine and this issue reoccurred. The only other time my heart rate would get so high was when I had blood clots. But I've been checked recently and on a blood thinner and my doctor says I'm negative for clots at this time. Ive been avoi
  7. Well I just took my temp now, and it is showing normal 98.6F. So I guess this thermoter is fairly accurate. So can Dysautonomia cause low body temp? Is there anything else that could cause these symptoms? I'm not sure what other doctor I can go see about this issue. My primary care, cardiologist, EP, and hematologist all ran extensive tests, and they cant find anything wrong.
  8. Last night I came home from work around 9pm, where I was sitting all day. I have a desk job, and there is a lot of sitting, although I do have a desk where I can raise up my computer monitors and stand occassionally. Anyway...once at home, I started feeling really cold. Checked my temp and it said 95.3F. I'm not sure how accurate my thermoteter is, but I've had this cold feeling before multiple times, and my temperature would be low. My heart rate was around 55-60bpm. After about 30min-1hr, my temp rose back closer to normal, and then I felt better again. I take Multaq for AFIB, twice a day, a
  9. I had similar issues and now using a BIPAP in combination with an oral dental appliance (ResMed Narval CC). This brings my jaw and tongue forward so it doesn't block my airway. I also went to an ENT doctor that performed a DISE procedure (drug-induced sleep endoscopy). He found the base of my tongue in back of my throat was the main thing causing my obstructions. I'd suggest looking into getting this short procedure done. It takes place in a surgical center, but only takes about 15min that you are asleep and then they wake you up. They use a camera down your throat to check for blockages. Th
  10. Well I got referred to Dr. Aziz Shaibani at Nerve & Muscle Center of Texas. Got an appointment scheduled. Same distance from me as Dallas Dr. Levine, but I have family in Houston area, and can stop there to visit. Plus I know houston better then dallas area driving. He seems to have some good reviews as well. I just hope the tests are genuine and not some crack-pot tests. I need to know what is going on with my heart rate. They said I would need to stop my Beta Blocker medicine two days before testing. I'm on a low dose, so that shouldn't be a problem.
  11. Can you not turn off the beeps? I've had numerous holter monitors over the past few years, and none of them beeped, nor did the instructions say they would beep if something was found. And I know I had some SVT and tachycardia when wearing them. I have AFIB but treated with medicine. It isnt anything serious as long as you get treated for it. I was in AFIB for 9 hours at the hospital. They left me in that condition, until I self-converted. I felt tired afterwards, but they wanted to check if I would self-convert or if they would need to shock me. My heart rate wasn't very fast, only about 100b
  12. Does anyone have side effect of compression stockings raising your resting heart rate, or heart rate in general? I got knee high medical compression stockings initially due to my blood clot issues. Sometimes my resting heart rate is in the 80's-90's with them on. I take them off, and somewhat later in day, it goes down to 60-70's. But other days, my HR is fine with them on. So I'm not sure if they cause this issue, or something else is causing my heart rate to be elevated.
  13. I finally got two doctor's names. One in Houston, Aziz Shaibani, and Dallas , Dr. Levine. I also found the UT Dysautonomia Center in Houston, which I'm going to contact Monday. I'm still having some issues with palpitations when standing fast, and also when I was at the doctors office recently, I laid on the table. Then sat up, and was really dizzy. Room was spinning. Doctor and nurse just wrote it off, and said at my age (46), to just get up slower. I need to be careful when I get palpitations and racing heart, because it could mean I have another blood clot, DVT/PE. As long as I d
  14. I went to a doctor today at the same clinic as the surgeon that did my surgery. He was of no help. He looked me over and took blood work which will take two days to get back. Said if it gets worse then to go to ER. Well my stomach feels better. But I had another issue.... I was rushing just a little to go back to work. Walked up one flight of stairs. I started feeling winded and light headed. Felt my heart pounding. Went to my desk and checked if I was in AFIB with my Kardia ECG Device. It showed normal rhythm but 135+bpm 135+bpm is not normal for me. First thing that entered
  15. First, I need to say I haven't been officially diagnosed with Dysautonomia. My cardiologist has mentioned it to me. Also, I use a BIPAP machine since I have sleep apnea and have AFIB but those are all controlled. I also had my gallbladder taken out about two weeks ago. Tonight before I went to bed, I started having chills and feeling cold. I didn't think much of it. I woke up at 4:35am with major night sweats, heart palpitations and heart racing 100-110bpm. Also my stomach didn't feel good. I took my temp and it was 96.1F, which is low for me. I was about to go to the E.R. but then slowly
  16. I am having similar symptoms for some time. I haven't been diagnosed with dysautonomia nor pots yet. I'm having a difficult time finding a doctor in Austin Texas that even knows of it. My doctors and cardiologist have blamed it on "anxiety" for a long time. I do have panic disorder and controlled AFIB with Multaq and Bystolic drug. And I do have anxiety at times but this heart rate issue disturbs me. Just the last few days, my resting heart rate was always around 80 and never went below until I went to sleep. When I would stand up, it shot up to 110+. Before I was on those drugs, I'd hav
  17. @Peter Charlton I have similar oximeter, that I have been wearing at night. Mainly I got it, because I have sleep apena that was still not controlled until recently with a BIPAP and dental appliance. But about three months ago, I started having some weird "unwell" feeling during the day, where my respiratory drive felt depressed. When I laid in bed, it got worse, and it caused me to stop breathing (central apneas). But normally I don't have central apneas. My oxygen would drop to low 80's. Now...I did have a recent DVT/PE during this time, but even after that, I kept having these episodes. No
  18. You mention dehydration and blood pooling. My doctor mentioned that too, and said to drink a lot of liquid, but not just water, but electrolyte liquids. I have tried drinking 3 64oz bottles in a day, and still have the issue. I also wear compression stockings due to previous DVT's, so blood shouldn't be pooling in my legs at all. 1. I don't recall when they started fluids, but at some point they did. 2. I had a couple of ENT visits just recently, and although it wasn't for this reason, he never said anything was wrong with inner ear. 3. Yes AFIB can cause abnormal beats, but I have
  19. What about the temporary change in heart rate, that goes up when standing, from 70 to 110bpm+? Is it also correct to wait a couple minutes before taking pulse? Usually my pulse will jump to 110bpm or so immediately upon standing, then level out at around 80-95bpm after a minute. I'm just trying to determine if this increase from 70 to 110 immediately upon standing, is "normal". My PCP said it shouldnt increase that much. My cardiologist doesnt seem concerned but is referring me back to my EP. I'm currently waiting to hear from my EP to see if he runs tests for dysautonomia.
  20. Thank you all for the responses. For a long time, I've felt so alone and vulnerable with these symptoms. My doctors basically gave up and said it was "anxiety" and referred me to the Mayo Clinic. But the thing is, I don't feel anxious when I go from a seated to standing position. I just feel my HR increase a lot and have palpitations. I know anxiety can fuel symptoms, but the symptoms came first, then the anxiety. Also before I started Multaq and the beta-blocker, my HR would go past 130bpm+. So it is lower now, but that is just because I'm on the heart-rate control medicine for AFIB. You
  21. I am a 46yo male living in Austin, Texas. I've been experiencing symptoms that seem related to Dysautonomia for years. It started years ago with Sinus Tachycardia. During the day, if I worked out at the gym or exerted myself a lot, my heart rate would get "stuck" at a faster rate, and it would take hours to return to normal resting heart rate. I had issues with sleep apnea which caused me to have AFIB one night last year. Since then, I got put on Multaq (for AFIB), Bystolic (beta blocker), and Xarelto for history of blood clots (DVT/PE). The Multaq and Bystolic seemed to be controlling my HR j
  22. Some days my resting HR is low 50's, other days 70+. I am not sure why.
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