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Posts posted by HCD77

  1. I wonder if it was my dysautonomia dr in Texas. He wouldn’t diagnose me with POTS because my tilt was off by 3 bpm. My heart rate only went up 27 bpm instead of 30 !! PM me I would like to know if it was the same dr. I’m so sorry this happened to you. I think with all the new Covid 19 longhaulers with POTS these specialist  are going to be overwhelmed. 

  2. Thank you @Pistol, I appreciate your advice about the at home testing. Sometimes I think I’m so desperate to prove to myself and to drs I have something and it’s not just anxiety and all in my head. I go to extremes sometimes. I will remember my head is not getting oxygen and that is not taking care of myself. I just want to get to the bottom and get the help I need. It has been so tough falling through the cracks at times I feel just powerless and hopeless. I know overdoing it and pushing myself is not helping though . 

  3. Thank you @Pistol, I will show her the results. I’ve got to get some doctor to help me get some kind of diagnosis and appropriate treatment . 

    The symptoms and at home testing continues .......

    I have been suffering from insomnia now for a year , before I had no problems. I can fall asleep but the pattern is I wake up between 2-3 wide awake feeling fine, just can’t go back to sleep .

    So this morning at 2 am I took my readings to show specialist. Im not on any meds right now , and no salt /fluids or electrolytes, compression hose since 9:00 pm. 

    Lying down 5 min 99/67  HR 73

    Sitting 2 min 107/80  HR 85

    Standing 5 min 95/70 HR 110

    Standing 10 min 88/65 HR 113

    Standing 15 min ...

    for the first time I got extreme nausea like I was going to throw up , palpitations, shaky, sweaty, swollen and tingling hands and feet , shortness of breath , confusion , whole body felt it was going to collapse or faint or seize. I got real scared immediately layed down and I immediately saw my heart rate start going down and I settled down. It took a while but went back to sleep woke up startled with 125 bpm it also went down pretty quickly . 
    My question is I clearly have a high heart rate upon standing and also maybe some kind of orthostatic intolerance. I’m trying to get documentation to show to specialist but won’t try that long standing again. It was just awful. Has anyone experienced these symptoms of passing out doing a poor mans table test or were these your symptoms during a tilt table test. As you know my TTT was off 3 bpm but I don’t know what else I need to do to get the point across that I am suffering with these symptoms upon standing, the fatigue and light head ness is still continuing as of now it was just such an uncomfortable experience I thought I pushed myself to far and would have to call ER that’s how bad I felt. 

    Any advice or personal experiences with TTT or poor mans TTT at home would be greatly appreciated. I’m 61 and my body can’t take too much more of this . I have been suffering probably on and off not knowing what I have had for 20 years. Thank you 

  4.   These reading are without meds, no salt/ fluids or electrolyte drinks or compression hose/socks . I am documenting some orthostatic vitals to show specialist on Thursday . These were recorded in early morning because I wake up with insomnia every night  between 2-3 and I am most symptomatic . My tilt was in the gray zone so I wasn’t diagnosed with POTS even though I have symptoms that mimic POTS daily. Each reading the heart rate increased 30 plus beats from lying down to standing. The second reading after 15 minutes I felt like I was going to pass out , very nauseated , neck and back pain , numbness in feet and hands , loss of balance , and palpitations. 

    First Reading 

    Measured at 3:45 am 

    Lying down 5 min  BP 91/63 HR 71

    Sitting 2 min   BP 109/80 HR 79

    Standing 5 min BP 96/77 HR 94

    Standing 10 min BP 104/80 HR 102

    difference in HR 71-102  31 bpm 

    Second Reading 

    6:30 am 

    Lying down  5 min BP 126/77 HR 70

    Sitting 2 min BP 124/87 HR 80

    Standing 5 min BP 111/81 HR 105

    Standing 10 min BP 103/73 HR 112

    Standing 15 min BP 101/70 HR 123

    difference in HR 70-123  53 bpm 

    I welcome any feedback , I feel so lost and trying to get to the bottom of my symptoms. I also want documentation to show to specialist. What does everyone think ? 







  5. Thank you everyone for your help ! I have been so depressed about the whole appt , I am sorry I haven’t responded sooner. My son drove all the way from Ohio to Texas to take me to my appointment because I had no one to even drive me .  I really was hoping for a diagnosis and a treatment plan to give me a better quality of life and get back to work. He is suppose to be so good and is even on this website . He didn’t consider my symptoms at all only the tests. He did give me lots of treatment choices 

    1. low dose of midodrine  

    2. manage it like POTS

    3. Refer me to Dr. Vernino, Mayo, Vanderbilt 

    He won’t support Long term disability because I don’t have a POTS diagnosis so that is really bad I’m going to lose my disability. I don’t have enough credits for SSDI. 

    I have a telemedicine appt with neurologist next week. Hopefully it will go better. 

    I discontinued meds before test , but I drank my usual salted water , electrolyte drink, and had on low cut compression socks 15-20 mmhg. I keep thinking maybe that effected it. Also I was only standing for 10 minutes because of Covid the tech said. 

    He also mentioned a rare disease called Nutcracker Syndrome that can cause POTS. 

    Any more suggestions , even for next appointment. I’m just devastated and lost . Thank you for your support ! 







  6. He said I was in the gray zone for POTS my heart rate went up 27 beats . I’m so discouraged. Why do I feel so bad and have all the symptoms of POTS or some dysautonomia? All bloodwork and tests were fine. Why do my feet turn red etc. Has anyone fallen through the cracks like me ? He is going to start me on low dose of midodrine . I’m so sad I haven’t found an answer . 

  7. My specialist says I don’t have POTS my tilt table was in the gray zone meaning only went up 27 bpm . I watch my heart rate go up upon standing 30 plus beats a minute of oximeter. I have all the symptoms of POTS. I can’t even get out of bed in the morning. Also it shows on my Apple Watch . The MST showed I have perfusion impairment or chronic fatigue. My renal Doppler also showed Nutcracker syndrome a rare condition which can cause POTS. I am shocked that there is really nothing going on ...then why do I feel so bad and has to go on long term disability. I’m just at a loss now. I’m going to see another specialist next week a neurologist. I still have all the symptoms of pots though ! 

  8. COVID 19 has taught me it only takes one time to be exposed. After 9 months of not going to a hair salon , I decided to go since my hair stylist moved into a suite where I would not be exposed to other clients. Most of my friends had already gone 4/5 times to get their hair done , not me I was just not going to risk it. I went with a KN95 mask and a lot of hand sanitizer and was so excited about getting my hair done and it felt so good !!! Well I texted her later, Oct 29th  to see about getting my brows done since I forgot to get them done Oct 23rd when I was there. She texted me back and said she had sinus pressure /head cold and had gone to dr and tested positive for COVID-19!!! If I hadn’t texted her I don’t think she would have called me to notify me! She tested positive Oct 27th. I could have definitely gotten it from her. Anyway I went and got tested and in my small west Texas city it was a nightmare!!! Of course I was also very anxious because I am in a high risk group and I had just gotten back from my autonomic testing where I had to drive 5-6 hours. I got a drive through test at a local pharmacy, this test you have to wait 2-3 days. I decide I wanted to try to get a rapid test there were only 2 places and one was completely booked so I went to a stand alone er to try to get one the waiting room was packed and no one was social distancing ! People looked real sick . I asked how long wait ...she didn’t know...of course . I preceded to tell her I was only there to get a test ...she said everyone here is waiting on a test. I went and waited in my car and finally after hours I was called for my test. Waited in room praying and sweating it out. Finally they came back after 30 minutes. My test was NEGATIVE!!!!!! I was so thankful!!!!!

    I told this long drawn out story because it can happen and it is real and not a pleasant experience. I know I got COVID-19 fatigue and thought I will go out get my hair done just like everyone else I know . I guess it shows you how important it is to wear a mask . I know I would rather have hair that had not been cut or colored any day than going through the fear of having COVID 19 , especially since I suffer on a daily basis and have been unable to work for a year due to POTS symptoms. I definitely dodged that bullet!!! The one time I take a risk I get exposed to someone with COVID 19. It just wasn’t worth it to me! I thought the protocol was my hair stylist was supposed to contact who she had been around! I see that’s not happening either where I live. I know I’m ready to hunker down now and enjoy my life !!! Like the ER doctor said it’s everywhere!!! 

  9. Just wanted to tell everyone thank you for your support. I’m so excited ( I know it seems strange) I am finally going to get autonomic testing done after being misdiagnosed for way too many years. I know it will be probably rough with the testing but I’m so glad to have more tests to get to the bottom of my symptoms I have been experiencing. Thank you again for your support !! I found a dr through this site and here I go !!! I am hopeful but realistic! This dr is known for being very thorough and getting to the bottom of why you have your symptoms. 

  10. I was so excited watching all the presenters at The Dysautonomia International Conference yesterday !  I started feeling flu like symptoms in the evening  (without fever ) which I have quit often , but don’t last long . Then today I felt terrible could barely get out of bed, I hadn’t felt this way in a few weeks. I felt achy, neck ache, migraine / sinus headache, chills , fatigue, but no fever at all. I felt fine previously,  I know this is a silly question but has anyone ever experienced this after watching a screen for a long period of time ? I’m just trying to get to the bottom of my triggers .  I want to feel better! 

  11. I have autonomic testing at the end of the month . I am so grateful I have the appointment, yet my biggest concern is I have to discontinue meds 2 days prior. I’m on low doses 5mg of Midodrine 3xs a day and 5 mg of propranolol anol once daily it was 10 mg and I am slowly tapering for my appointment ( this was prescribed for anxiety from my psychiatrist for anxiety, not for lowering heart rate ) .My electrophysiologist who first diagnosed me prescribed the midodrine. I am going to call my autonomic specialist today about the meds and my concerns, but I wanted to ask everyone what your experiences were when discontinuing meds before tests. Did you have to stop your meds prior? What are some questions/ concerns I could ask my specialist about discontinuing the meds and exacerbating symptoms or a crash ? 
    So concerned about having a crash , since I have been doing so well. 



  12. Thank you for the tips @Pistol  I’m really thankful I have the testing with one of the dinet.org specialist/ advisors . I have heard wonderful things about him and how he gets to the bottom of what might be causing POTS and is so thorough. I just had a lab done with complete neuropathy panel. There were so many vials. I had heard about the lab work on this forum and how many tests were done . I will let you know how the trip went when I return. 

  13. @DeltaAll I know is last year at this time I felt really good. I was working a full time job and didn’t even know I had POTS. I did have the neuropathy in my feet, red feet upon standing,  heat intolerance , wore compression hose because I thought it was varicose veins, so basically I had many symptoms of POTS but thought it was other things. Then in early October I went to get my regular flu shot and exactly a week later started have heart palpitations, night sweats , night mares and waking up every 2 hours. I immediately went to the doctor , but all tests where fine. It kept snowballing into major fatigue, nausea , chills all POTS  etc . Here it is a year later and I am wondering if it was the flu shot that exacerbated my existing dysautonmia that I didn’t know I even had . I still wonder to this day if it was the flu shot . I’m trying to decide if I want to take it this year like you . If I don’t this will be the first year I haven’t received it. I probably will take it though because I’m high risk because of age . 

  14. @Pistol, That is exactly what I feel like too! I swear I’m getting better and then I feel so horrible the next day!!! I get so discouraged and very down. It seems like doctors and vacuuming do it to me too! Ugh !!! I know I can’t vacuum. I just try to get through the day and then hope and pray the next day will be better. I also research and research to figure out what I did that could have triggered such horrible symptoms. I guess I’m  just hoping I can change the outcome and have more good days. 

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