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HCD77

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About HCD77

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  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.
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