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Everything posted by HCD77

  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.
  16. @merkat30 I’m so sorry you are having such horrible symptoms at night. I still have awful insomnia. I fall sound asleep and then wake up between 3-4 am if lucky . Wake up with night sweats , then I take a 5 mg of melatonin and try to go back to sleep. I can go to sleep relaxed and calm and wake up feeling horrible. It is the worst thing to have chronic insomnia. Sometimes I wake up with achy pain head to toe. Yes I have nausea too. The nightmares can also be very disturbing. I have a prescription for gabapentin but a little scared to take it. I may try it soon , I heard it helps with the nigh
  17. I see my specialist at the end of October for the first time. Thank you so much for your comments. I hope I will have a better of quality of life soon.
  18. Does anyone have excruciating painful body aches and tenderness sometimes? It’s not all the time but it seems like after I sit at a computer or maybe I’m doing too much. I was just wondering if anyone else has this symptom and what relieves it? I’m in real pain and I was doing real well even walking. I see a specialist next month. I’m on a low dose Midodrine and propranolol and normal non pharmaceutical protocol.
  19. @roamer1That’s awesome ! Please let me know how the autonomic testing goes and your appt. You can pm me if you want. I’m so glad you got in. I’m sure he will be able to help you. He’s suppose to be the best in Texas. Best of luck to you !!
  20. @Green48 I’m so sorry you have had such rough year. I know I took some amoxicillin months ago that gave me heart palpitations. I however am very sensitive to all meds and the first thing I notice is most meds effect my heart rate.
  21. @roamer1I’m so sorry you are going through this! You are very fortunate to get a referral to Dr. Vernino, I’m sure he will get to the bottom of what’s going on with you. I’m waiting to see if I will get to see him myself. I was diagnosed with POTS by my electrophysiologist. Lots of waiting and paperwork involved . There is also a Dr. Suleman in Dallas at Heartbeat Clinic . He is an advisor on dinet.org website. I have a telemedicine appointment with him this Wednesday. I wish you the best with Dr. Vernino.
  22. I’m just curious since POTS and other Dysautonomia’s can be so life altering. I know 25% of POTS patients are not able to work or attend school . I was wondering how many people can still work or go to school ? If you can what is career that enables you to still work? I am a teacher and I am not able to work because of my symptoms.
  23. I have lost 18 lbs since my symptoms started in October 2019. It is scary weighing 118 lbs at 5’10’’. A year ago I weighed 136. I have always been thin, but I’m so concerned even seeing a dietitian. Between being a prediabetic and eating low carb smaller meals it’s so hard to put on weight. I have a good appetite and eat through the nausea, but still not gaining. I have telling my PCP since October I have unintentional weight loss which should be a huge red flag for all doctors to listen and investigate. I get so discouraged.😞
  24. Thank you so much @autonomicreg !! I had a telemedicine appt with Dr. Suleman several months ago he encouraged me because of the pandemic to just stay with my electrophysiologist here and not come to Dallas where the cases are surging , but I have an appt with him in person in October. Hearing your experience makes me feel very hopeful. I would have already seen him but the COVID has really made getting medical care a real challenge. I sure hope you find a doctor that helps you as much as Dr. Suleman did. Since you have had all the testing , would you be able to just continue with him usin
  25. Hi @autonomicreg I’m in Texas , May I ask where did you get your autonomic testing? I am awaiting a referral for Southwest Medical Center in Dallas. I did see a video called Changes on the dinet website . The doctors name is Svetlana Blitshteyn. I was really impressed . If I were in NY I would make an appt. with her office. I think she’s in Buffalo. Best of Luck!
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