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Everything posted by HCD77

  1. 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.
  2. 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.
  3. @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 !!
  4. @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.
  5. @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.
  6. 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.
  7. 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.😞
  8. 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
  9. 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!
  10. @Jennie, I live in Texas about 5 hours away and I was just looking into POTS Care. I did find reviews on some blogs. I know it can cost up to 5K-10K if you have a budget for that, I know they don’t accept insurance. I have heard they use Biofeedback ( Heartmath )and meditation. I am definitely one who is interested in a more wholistic approach but the cost and reviews made me very weary. Hopefully you can find someone on this website that has first had knowledge . These are the blogs I found when I was researching POTS Care Treatment Center. This is a past post I found researching .
  11. @Pistol I am so sorry this happened to you. Please take care and rest. I hope you get better soon. You help so many on this forum by sharing your knowledge , experiences and your positive attitude is always an inspiration.
  12. I am newly diagnosed with POTS and I can tell I feel so much better as the day goes on just like I am back to normal . After I take my meds and salt/fluids/ and put on my compression hose I feel so much better. Then in the morning I feel awful and it starts the pattern again. Does anyone else have a pattern like this ??? Sometimes I feel like I don’t even have any symptoms. I would be interested in your stories because I just don’t understand the huge difference. I am so thankful for my symptom free day. Then in the morning I feel awful until about 9:00 after I exercise.
  13. I’m so sorry about your wife. I know what it is like to be afraid of takings meds especially SSRI’s. I have tried Lexapro , hydroxizine , Effexor and Burspar. All had frightening side effects even at low doses. I wish there were a med that would help me. I know many people that have been helped by taking SSRIs and SSNRIs. It’s just trial and error. I am newly diagnosed with POTS , before I thought it was anxiety. I took the meds because I thought I had anxiety. Now I take Midodrine and it seems to help me. I hope your wife finds a med that will help her with her symptoms. She is very fortu
  14. Who diagnosed you? My EP diagnosed me but he also performed a cardiac ablation on me thinking I had SVT. I talked to my neurologist and told him I was diagnosed with POTS and he told that is why my EMG was normal 2 years ago. He said I had autonomic neuropathy . I’m sure I have had this a long time just went misdiagnosed like all of us. There is a list of autonomic specialist on the diner website. I’m being referred to a specialist on the website by my neurologist, but especially because of COVID it is a slow process. I know the feeling about running to so many doctors. Here is a w
  15. Kristin , I’m awaiting a disability now to be approved. I am also a teacher in Texas, another hot spot. I have been off on disability since October 2019 with a mystery illness that turned out to be POTS that I just got diagnosed with. I would like to go back because I need a job, but I probably will not since I still do not feel I can perform my job duties. I’m also high risk because of age. My small Texas city is surging right now. I do know a colleague that had several staff members with COVID 19 but she did say they recovered.One was very sick. I’m sure they don’t have POTS though. Nobody
  16. @Pistol I guess I was hoping it was wrong, ugh my HR went up to 179 today ! Just picking up a few twigs on my lawn. I think I’m in the denial stage thinking I’ll just get over this and find the right meds. This HR was on meds! 10 mg of Midodrine 3xs a day. I want to try propanol to see if it helps . The Apple Watch is what made me start thinking I had POTS. I also measure HR with Pulse Oximeter but I never see it above 116 maybe 120 .
  17. My Apple Watch is showing very high heart rates when I stand . I was wondering if it is accurate ? Does anybody use an Apple Watch to monitor heart rate ?
  18. Thank you @yogini I saw where some POTS patients used them together. I was hoping it could reduce my heart rate and maybe that would help with anxiety when my heart rate goes up. I just went outside to pick up some debris in my yard and my heart rate according to Apple Watch went up to 179. I do stand for short periods of time ok but anything the least bit strenuous my heart rate goes up high. I’m thankful what I can do but I really need to return to work .
  19. I’m taking Midodrine 10 mg 3xs a day and it has really worked for some POTS symptoms. I can stand longer without symptoms. I really want to return to work but I feel like I have anxiety and with the COVID 19 being a teacher. I wanted to try propanol for anxiety. I know low dose propanol is used for POTS too. My psychiatrist thought it might be an option too since I have extreme adverse side effects to many SSRI I have tried. Need help Has anyone had success with both? Thank you 😊
  20. Thank you @Pistol for sharing your information. I am a teacher and navigating what to do with the school district so I don’t lose my disability is overwhelming. Sometimes I don’t know where to go for resources. I am waiting to hear from the company yet I need to tell my school district soon because I am under contract with them. I am so confused and sometimes feel hopeless. I am all alone with no other financial support so it is so detrimental I make good decisions. I have read every article online about LTD and Dysautonomia and applying and how to make smart decisions. My insurance company to
  21. I am waiting on approval for long term disability approval that I took out with my employer . Any tips ??
  22. Has your cardiologist put you on any meds?
  23. Have you tried DGL licorice? This usually works for me. It helped me get off PPI too. PPI have terrible rebound reflex like you said. I was only on them for 2 weeks. Also Kefir helps. Dr. Andrew Weil recommends these. Use DGL (deglycyrrhizinated licorice). Slowly chew two tablets or take a half-teaspoon of the powder before or between meals and at bedtime. Taper your dose down after your symptoms are under control. Consider slippery elm. It can heal irritated digestive tract tissues.
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