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WarpedTrekker's Achievements


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  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 machine and lay down. I used two different oximeters, and they always record my SpO2 going down to around 89% and then back up to 94-95% after a minute. Because of my two past DVT/PE's, my normal SpO2 is around only 94-95% max. I took a flight earlier in the year and started feeling light headed during the flight and very flush/warm in my face. I measured my SpO2 multiple times, and it was dropping as low as 85% at times, and then back to the low 90's. To get it to 95%, I had to take deep breaths. This happened on my return flight too. And I was wearing compression stockings. I've talked to my hematologist, cardiologist, and pulmonologist. They all ran tests on my heart and lungs and didn't find anything wrong. This is a little frustrating, since I'm planning another flight soon, and am worried my SpO2 will drop to the 80's again. But my doctors don't seem to have any answers. I'm wondering if this is orthostatic hypotension, or just related to my past DVT's that may have messed up the valves in my leg veins. Has anyone with dysautonomia had symptoms like this?
  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+ . Then I started to get very anxious and shaky with trembling arms. and felt like I was going to pass out. I waited a few minutes, and tried taking deep breaths. Eventually my heart rate went back down to normal 70-80bpm. My Electrophysiologist said the ECG showed I was in normal sinus rhythm and that I just had tachycardia. He has no explaination though, on why I get these episodes. I've had several of these now when I'm at home, and usually when I sit on my couch/recliner for an extended period. I've had a recent EKG and Echocardiogram which both were normal. I'm at a loss at what is causing these episodes. Sometimes I get just dizzy when standing up when getting out of my car. I am contacting another Dysautonomia doctor to get tests ran again. My doctor thinks it is anxiety or panic attacks. I used to be on medicine for anxiety, but since I'm now on Multaq for AFIB, I'm unable to be on any SSRI medicine.
  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 Thanksgiving night, I was about to go to bed and then it triggered. I rushed to the ER. They gave me IV fluid and said it appeared I was dehydrated. But I still think something with dysautonomia or POTS is happening. Just now, today I started feeling bad. I don't notice any palpitations but I did notice faster then normal heart rate. I'm at 100+ just standing at my desk and it won't go down. If I sit down for awhile it only goes down to around 88. I'm usually in the 50-60's sitting down and still less then 100 standing. So something is going on. I found a doctor in the Austin Texas area that does dysautonomia testing and I'm going to schedule with him more testing. My heart rate seems to get worse sometimes depending on if I eat a lot of food. I'm also wondering if it has something to do with the food I eat. Next month I'm scheduled for allergy testing. My cardiologist had already done some blood work and said that I had some inflammation going on and to get on a Whole 30 diet. But I have not done that yet. Also must add... When my heart rate stays elevated like this and I'm just sitting down. It makes me feel like a headache is coming on. And then makes me feel a little faint when standing. I think I have exercise intolerance too. Because a month ago I tried going back to the gym a few days. Each time I just walked very slowly on treadmill my HR shot up to easily 120+. Going up one flight of stairs slowly at work shoots it up over 130 sometimes. This is when I'm on my Multaq and Bystolic beta blocker. I'd hate to see it if I stop both medicines!
  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 sleep on my back most of the night, due to wearing my CPAP mask. If I wake up during middle of night, and move around just a little. Like just move one of my legs. My Heart Rate shoots up to 100+ bpm! I use a Contec SpO2 device to measure my HR and oxygen levels. I also take my pulse and it also shows my HR very high. My HR spikes up to 100+, then eventually goes back down to normal in the 50-60's. This has been happening for a long time. Before I had my first AFIB incident, I was not on beta blockers and my HR would shoot up to 130+bpm. This eventually caused me to go into AFIB one night. If I sit for extended periods at work, or if I lay in my recliner at home for awhile, and then get up quickly, I get major palpitations, and my HR shoots up 100+bpm. This all started happening several years ago or longer, from what I remember. Some nights are good. Other nights my HR goes crazy fast 100+. My cardiologist and Electrophysioloigst have no answers. I'm getting a referral to another dysautonomia doctor in Austin, Dr. Yessar Hussain. Is this some type of dysautonomia and should I get retested?
  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 avoiding the gym and exercising because every time I go up stairs or workout a little bit my heart rate climbs a lot. I'm now wondering if this Multaq for afib is causing this issue as well. I'm at a loss for a definite answer at this point.
  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, and took it that evening at 7pm like always. So I'm not sure if it is this medicine causing the issues or not. I'm also seeing a Dysautonomia doctor next week for the first time. My symptoms seem to come and go. What happens if I see them, and I dont have symptoms during that time?
  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. Then, once you know what is causing your blockage, there is surgery that could help. Some ENT doctors do a new style of surgery with a Davinci machine to cut out tissue in your throat and tongue. So all of those are options, if you don't like BIPAP masks. I use both my BIPAP (ResMed AirCurve 10) with AirTouch mask, and my Oral-Dental appliance. It is a PAIN to wear at night, but if I don't wear it, I suffer from low oxygen levels, racing heart rate, palpitations, and other symptoms. I had several sleep studies, and always came back "mild apnea" with AHI 7, but I had NO REM sleep during one study. Even with my low AHI 7, this was causing some major issues for me which is why I force myself to use my equipment. I sleep better now. I'm at the point though of asking my doctor again about surgery to reposition my jaw and cut out some tissues and fix my deviated septum.
  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 100bpm.
  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 don't feel out of breath majorly, or have trouble breathing, then it shouldn't be clots. I'm on blood thinners, for previous DVT/PE, but still could get clots, although chance is low. Last two days at work, I was going up one flight of stairs slowly, and I had some major palpitations, and heart raced. When I got to the top, I took my pulse and it was 120-130bpm. That is high for me, especially just walking up one flight of stairs. At one point I thought I was getting a little out of breath, but it wasn't as bad as in May 2018, when I had my most recent clots. All of this is just giving me anxiety. I have Mayo Clinic scheduled for end of this month, but now think I could just go to Houston/Dallas first.
  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 my mind was another blood clot. DVT PE. But I'm on blood thinners and getting a blood test Monday by my hematologist for clotting. I also wonder if it is the medicine I'm on causing my heart to work harder. I'm on Multaq for afib and Bystolic beta blocker. If this happens again though I'm going to the ER.
  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 my symptoms subsided the more I stayed awake. My temp is now 97F, and HR back to normal 70bpm. I'm trying to think what caused this, because I was doing fine for awhile with no night sweats. Late in the evening I had ate a sandwich with some Pepperjack cheese slices. I'm wondering if that could trigger such a response? Can dysautonomia cause body temperature to drop and cause chills? I'm at a loss here what to do.
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