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Everything posted by HCD77

  1. @RexieDr. Golden is my doctor. I have only had a telemedicine appt. If you don’t mind sharing , what is your award winning herbal program?
  2. 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.
  3. I just started taking it today. Midodrine / Propranolol did not help that much.The side effects made me feel worse. I’m also suspected by neurologist of having MCAS that caused POTS. Now trying fludrocortisone to help symptoms.
  4. 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!!! 😃🐴🐎
  5. 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.
  6. 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 .
  7. 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
  8. 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
  9. 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
  10. 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 .
  11. 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
  12. 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 😊
  13. 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
  14. 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.
  15. 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.
  16. 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.
  17. 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
  18. Thank you @Pistol for posting the link. I’m really looking forward to attending the conference!
  19. I’m so sorry you are going through this difficult time. I’m glad you have an appointment. I saw the video “Changes “ were they interviewed Dr. Thompson. I’m sure you will get good care there. I hope the intern can get to the bottom of your symptoms and come up with a good treatment plan for you. Keep us posted. Take care
  20. 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 experienc
  21. I know this is a silly question . I was just wondering why I am so fatigued ? What physiologically is going on with the body to explain extreme fatigue? I can only describe it as my mind wants to be active and doing things but my body can’t or won’t . Mind over body doesn’t help.
  22. 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.
  23. Will be traveling 6 hours to see specialist for the first time at the end of October. I have 2 days full days of autonomic testing . Any tips traveling with POTS or any helpful information for the testing ? Thank you 😊
  24. @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
  25. @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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