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Lisa C

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About Lisa C

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  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
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