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About Clash0501

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  1. Aeris5000, thanks so much for your response. The response email I received basically said the same thing. I can play with the dose to achieve a workout. He actually px'ed me a higher dose than I take but he said as long as I wasn't feeling symptomatic I could stay at the current dose or adjust as needed. As for RHR he said that mine was good since starting the nadolol, but had been a little high throughout the medical history he had researched on me. Since it is early on in taking nadolol he said to contact him with any changes. My GP has basically said the same as your neuro and EP or what yo
  2. Thanks Chaos. I find that my heart rate is starting to come back to normal faster after exercise, so I guess that is a plus. I'm just going to have to go over all of it with the Doc I guess. I am having trouble getting my heart rate up during recumbent bike exercise, I warm up for a few minutes then go to intermittent lower and higher levels then do a few minutes of cool down. The total time is 20 minutes, but I'm having trouble getting to the 135-150 range, so I'll ask about tweaking my dose. I was given the Klonopin when the GP thought I was dealing with anxiety, and well I was, every time m
  3. Sorry, I have emailed the nurse and I am waiting for her reply. I know he said I should exercise just wasn't sure what I should try to achieve with it. The resting heart rate questions were not really in relation to someone with POTs but in general. I read anywhere from 60-100 for RHR but that seems like such a large range. And can't seem to find normal HR in relation to light activity. Thanks for the advice.
  4. I had an appointment with my EP yesterday. He had started me on Nadolol the week before 20mg twice a day but since it was Friday and I have had big bp drops with other bbs I chose to do 10mg twice a day. The appt. went well, I had a notebook of questions. He answered most of them. He doesn't specialize in POTs but I haven't found anyone in my state who does. I'm set up to go to Mayo-Jacksonville the first of Feb but I may put that off for now. I know I have POTs, EP says it is classic Primary, whatever that means. Been on a month long heart rate monitor and all looked good as far as other issu
  5. Thanks, kJay. It is all just so much to take in and I feel a bit lost, so this place has been a source of great comfort and support.
  6. Thanks so much for the responses. While on the Cardizem, it wasn't controlling my HR so he had upped me from 120 to 240, this was all over the phone after hours. Then when I called him and told him about the flushing, heart rate still high, he asked what I was taking. He said that was a high dose and I tried to remind him it wasn't that way with the BBs he had tried me on but he just kinda fluffed me off and said to give him the night and call in the morning. The next morning his nurse caught him between procedures so I think he just went of the cuff, not remembering that I couldn't even toler
  7. So Cardizem, the channel blocker I was on didn't seem to help so the EP is trying me on Nadolol. I spoke with his nurse over the phone and she called it in. It is 20mg twice a day, which seems fairly high. I was first on Toprol xl at 25mg but my blood pressure fell to low. Then pindolol which did the same thing. It was after 5 when the px was called in and for now I am only going to take 10mg in the morning and 10mg the next dose just because I don't want to have bp issues over the weekend. I hope I am doing the right thing. I have an appt with the EP on Tuesday so I can discuss it with him th
  8. I don't have a lot of knowledge yet about POTs, I'm new to the forum and to POTs. But my son was dx'ed with Crohn's Disease a few years ago. Due to the inflammation and scarring that occurs in the GI tract with Crohn's Disease, a lot of Crohnies are vitamin deficient in several vitamins. Since malabsorption is an issue and vitamins are absorbed in certain parts of the GI tract deficiency occurs. The most important with CD are Vitamin D, B, folic acid, zinc and some say magnesium. In researching my son's illness, I found it interesting that gastritis can cause pernicious anemia and that the int
  9. Oops I'm sorry, normal ref range(although it can vary by lab) is 3.5-5.2 and mine was 3.4, the doc said that wasn't really that low but had told the nurse to give a supplement for anything below 3.8. So now I take a px'ed potassium supplement. Along with weekly px'ed Vitamin D 50,00 units because my vitamin D level was 14. My son has Crohn's disease and in the management of it I learned that the Vitamin D3 with co-factors is supposed to be better than the vitamin D2, so as soon as I finish this px I'm switching to the D3.
  10. Blood pressure remains nearly the same in all positions, maybe slightly lower lying but usually anywhere from 105/68 to 114/72. I've made an appt with the Mayo Clinic in Fla for Feb. I thought I should've tried the Florinef alone as well and will be discussing this with my EP.
  11. I am new to the forum and to POTs. At least at this point that is what the local EP is thinking. I have had a TTT and the tech said borderline POTs. I'm not sure what to think. During the tilt table test, lying down my HR was low 70's, bp normal, standing position it jumped all over the place low 100s to 120. I had had 3 tachycardia events, 2 while lying down and 1 while cooking in a hot kitchen that preceded the investigation for problems. An echocardiogram showed good with a strong heart. The 3 events were over 12 weeks ago and I haven't had any others, the testing and doctors make me nervou
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