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HCD77

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  1. Thank you for sharing your wonderful experience!! I’m so glad you were able to do this! Just reading your experience made me feel alive! I could just picture your wonderful day!!! 😃🐴🐎
  2. Try Dr. Vernino in Dallas .He was one of the main specialist speaking at The Dysautonomia International Conference . I just had a telemedicine appt with one of his associates. I could have autonomic testing done next week but I can’t get there. 😞 Also with pandemic I’m a little concerned. I am going to wait until March.
  3. 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 .
  4. 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 m
  5. 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 , n
  6. 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, Ma
  7. 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 .
  8. 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 se
  9. Hi everyone, It’s the appt I have been waiting for !!! I had 2 days of many autonomic tests last week . Tomorrow I find out the results . Does anyone have any questions , tips or advice when talking to my specialist. I’m so ready to get to the bottom of my symptoms and get treatment, so I can have a better quality of life. Thank you 😊
  10. 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
  11. 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.
  12. Thank you ! I did feel better today after rest, I was able to walk today too. Headache is gone. Thank you for your support and encouragement.
  13. Thank you , I did sit for a long time in front of the computer. I rested all day today , I usually don’t rest this much but I feel somewhat better. I’m trying to accept my limitations but don’t know them yet.
  14. 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 trigge
  15. Thank you @Pistol for posting the link. I’m really looking forward to attending the conference!
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