Jump to content


  • Content Count

  • Joined

  • Last visited

Community Reputation

0 Neutral

About HCD77

  • Rank
    Advanced Member

Recent Profile Visitors

The recent visitors block is disabled and is not being shown to other users.

  1. 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.
  2. 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.
  3. 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.
  4. 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
  5. Thank you @Pistol for posting the link. I’m really looking forward to attending the conference!
  6. 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
  7. 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
  8. 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.
  9. 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.
  10. 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 😊
  11. @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
  12. @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.
  13. Thank you @MomtoGiuliana, I will check other forum posts. I did see lots of posts about dental procedures but I wasn’t expecting the reaction a day later. I did do well during the visit I thought I was doing great ! I was calm and I didn’t even take a med like I was planning to. That is what puzzles me about POTS , that I can feel so good and hopeful and them BAM ! I literally feel so so sick. Why does this happen ? I try to avoid triggers and it still happens. I question everything I do ( dentist appt or was it the milkshake afterwards, on and on) I just feel like I should be feelin
  14. Yesterday I went to the dentist to get a regular cleaning and 4 cavities filled. A friend drove me. I felt fine the whole time I was there. Came home very tired and rested. Then normal good evening. Normal insomnia I usually experience . Then this morning woke up with headache , shortness of breath, and total fatigue where I couldn’t get out of bed. This is the worst I have felt in a long time . Anyone experience this feeling after a dental procedure?
  15. I wonder if I could have gotten low blood volume after my emergency hysterectomy . I had to have a transfusion with 2 liters of blood. My POTS systems started shortly after, then returned 5-10 years later as of now. I had 5-7 years of pretty good health. I had no idea it was autonomic dysfunction. I was 50, but started having weird symptoms after I had my son at 40.
  • Create New...