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Everything posted by HCD77

  1. Thank you all so much for your feedback !😃 I am newly diagnosed and mornings are better now since I started Midodrine. I see an electrophysiologist here in my town, but I did get a telemedicine visit with a automic specialist on the list. I am very excited. All your feedback and support has really helped. I talk to my new doctor July 1. Thanks again the support here is amazing!! 😃
  2. Thank you all so much for all your help! I did take the head of the bed down and I feel so much better. It just different for everybody. I am such a rule follower in order to get well I like to try everything that is suppose to work. I am newly diagnosed and I appreciate all of you and your support in this forum. 😃
  3. Thank you all so much for your feedback! I am newly diagnosed and appreciate all the support here! 😃
  4. Today I saw my dr and he said I needed to have between 6,000 to 8,000 mg of salt per day. Im newly diagnosed . A friend went with me and wrote down the 6,000 to 8,000 mg but she didn’t write down salt or sodium . I know they are different calculations. I know we figured it to be about 1 tsp of salt per meal. I’m so so confused . I could ask him again. It just seems like a lot of salt. Anyone have any idea? Thanks 😃
  5. Has anyone had a negative experience after elevating head of bed? I just know am having headaches and lots of dizziness. Woke up the first 2 nights with stiff neck. Any suggestions? Lots of the POTS protocol seems like it’s causing problems I didn’t have before. Would welcome any feedback. Thank you 😊
  6. I am a newbie here too. I’m so sorry you are going through all of this. I’m like you are I sometimes feel good and so excited I over do. I’m probably in denial too. I am being treated for POTS now by electrophysiologist. I think he misdiagnosed me though. I was diagnosed with SVT had a cardiac ablation and I just read that an ablation can make POTS worse. I usually don’t go on Facebook but I do think there are some good support groups you will find.
  7. I was wondering if anyone took Thermotabs or other salt tablets. I seem to be seeing some improvement at least I can be on my feet for longer without feeling like I’m going to pass out, have a panic attack or have wobbly legs. Also driving a car is when I feel the best ( of course short trips) does anyone feel better when driving?
  8. I went for a follow up after ablation. My electrophysiologist was really sarcastic when I told him I thought I had POTS and thought I had it for years. He told me he didn’t want to see the data from my Apple Watch if it didn’t show heart waves. He told me to increase salt , fluids and elevate my bed. I’m already wearing hose. He then said I will see you in a month because you will probably need meds. He then said so I could hear again “It’s always good to have a patient that self diagnoses them self” I felt so down and angry. I live in a small podunk town in West Texas with horrible medical ca
  9. Hi Everyone! I’m a newbie I probably have had parts for a long time though but it’s progressively gotten worse now I’ve been on a disability for nine months and didn’t even know what I had it seems like I have some good days but it’s getting worse and my mornings are awful. I can see having symptoms when I am standing but I have horrible symptoms for hours after I lay down where I am fatigue SOB and chest pain. I even thought of going to the ER this morning. I hung in and they got better in a couple of hours where I could get out of bed. Does anyone have the same symptoms shortl
  10. I’m so sorry you are having a hard time on Lexapro. I had a terrible reaction on a low dose and ended up in er by ambulance . I also was prescribed hydroxizine with it. I feel like my body was on fire. This is before I was diagnosed with pots. I am sensitive to all meds I was given to treat my so called “anxiety”.Prozac, Effexor, and Burspar. Xanax worked until it started giving me problems taking it nightly . So now I am on a diazepam taper that got me off of Xanax. I wish I would have had my Apple Watch back in October of 2019 when my severe symptoms started. The Apple Watch shows how my h
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