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HCD77

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About HCD77

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  1. Thank you @Pistoland @MTRJ75, that’s good to know it will hopefully get better. Last time I just discontinued it after several days because of side effects and TTT . I also just got my second Covid 19 booster on March 2nd , so I was wondering if that could have effected me. I felt pretty bad the day after for about 24 hours. Still so glad I got it. Hope I didn’t get a flare from the shot . I’m going to give it 2 weeks. I just don’t like staying on a med when I know it won’t work because then getting off of it can be a real challenge with the taper or withdrawal. Thanks again 😃
  2. Just started propranolol again ... 20 mg 3 times a day...it is doing a good job of bringing down heart rate , but side effects are feeling of shortness of breath and being really tired after exertion. How long did you give the beta blocker to work and get optimum dosage? Thank you
  3. @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?
  4. 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.
  5. 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.
  6. 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!!! 😃🐴🐎
  7. 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.
  8. 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 .
  9. 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
  10. 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
  11. 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
  12. 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 .
  13. 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
  14. 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 😊
  15. 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
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