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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 you had gathered, that as long as you aren't having symptoms the heart rate is not extreme then he isn't concerned. dkd, I know what you mean about the heart rate when using the bike, I can get my heart rate above 100, but it only gets in the 135-150 range for a few minutes and only when I am doing the more strenuous hills and I am just not at a point yet where I can stay at that level, not really due to any symptoms, it just makes my legs and especially my knees burn and ache so bad. Ha I am defo out of shape but I guess I will just keep working at it. My new icky thing is night sweats, right around the neck and head area...ughhh.. I don't know if this is POTs or one of the meds I'm on as I have read that bb can cause night sweats.
  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 my heart rate would shoot up, I would get really anxious!! The EP said I should wean really slow so that is what I am trying to do.
  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 issues. He is fine with me doing 10mg in morning and 10mg in the evening and moving up as needed, if needed. And that my fluid and salt loading sounded appropriate. Blood pressure is generally around 110-117/68-72 regardless. But here are the questions I forgot to ask: 1. What is the general consensus on a good resting heart rate? Mine is now anywhere from 64-74. 2. When up walking around the house, doing chores what is considered a good heart rate? I haven't really tested this after any long length of chore activity, I have stairs in my house and hauling down a load of laundry, folding and hauling another back up results in HR 101-104. 3. How will being on a bb affects my exercise? I have a recumbent bike and should have a rowing machine by tomorrow, so do I or should I work harder to get my HR into the cardio range 135-150 that is recommended? Lastly, I was put on Klonopin, before the POTs dx. It started as 2mg dose then moved down to a 1mg dose that I took half in the morning half at night. I then cut the dose to 1/4 of the 1mg tablet in the morning and 1/4 at night. I have now, 4 days ago, cut out the night dose. I have noticed in the evening I now get headaches and this "flight/fight" response without high heart rate and slight nausea, could this just be from withdrawing the evening dose or more POTs related?
  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 tolerate 12.5mg of Toprol XL nor 5mg of pindolol. Anyway, I used a pill cutter and cut the twenty in half, so I took half this morning and then half just now. So far so good, pressure has dipped a bit after first dose but not too much. I'm assuming there is a point that if it gets too low I should contact the on call or seek care? Would it be right that it is different for everybody? Any experiences with this? Also, I started the nadolol last night. Up until then I had not had anything but a heart rate that would hit the mid 120's when standing and a feeling of fatigue in my legs if I stood to long. About an hour after the dose I stood up to take my heart rate and it moved to 120 in the first five minutes, then all of the sudden it plunged to 74, I felt a feeling of dizziness and that I was going to pass out. Is that normal? And not to just keep going on and on but being such a newbie, one more question. I started wearing compression stockings today. Not knowing which I bought the thigh high. I put them on when I was going vertical to run errands and such but then took them off when we got home. I was feeling so fatigued, I went to take a nap and felt I shouldn't wear them lying down. Is this right? So much to learn and such a steep learning curve, thanks to each of you for all your support!
  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 there. The most fearful part for me is not knowing what is dangerous and when to seek help as far as falling bp, or low heart rate, which of course kicks in my anxiety.
  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 intrinsic factor needs to be tested because the deficiency can be masked. I have had two endoscopies 4 years apart the first was h. pylori positive and since I was having symptoms it was treated, my symptoms went away. The second was this past November and I had unfortunately been on Nexium for a month when I had the test. Visually I looked normal but the biopsy showed chronic inflammation/chronic gastritis that was h. pylori negative. I've questioned whether I could have pernicious anemia but the docs say that my visual would have been a mess for that to have occurred, I'm not sure I agree since I had been taking the nexium for a month. My B-12 level are low normal and I am now supplementing over the counter. My Vitamin D level was 14 and I was px'ed Vitamin D2, 50,000 units once per week. Through my son's illness and my research I've learned that D3 with co-factors is better absorbed especially when taken with fats like cottage cheese, olive oil etc. So once I finish this px I think I'm going to switch to my son's regimen.
  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 nervous so I have had anxiety attacks while at appts but they don't feel the same as those tachy events did. I've tried Toprol xl, side effects were horrible, florinef and pindolol at the same time and couldn't tolerate. Then I started the high fluid/high salt, the doc wanted me to start Cardizem 120 but it was over the holidays and after the effects of the other three drugs I wanted to be able to contact him if it went badly. I woke up the day after Christmas, lying down pulse was low 70's bp normal but then I had an all over body flush, my feet and hands went numb and tingly then they started cold sweating profusely and legs started cramping. Called EP he agreed to admit to run some tests, he felt I was low on potassium, I was but only a little, like 5.3, all tests he ran looked good. While in the hospital I was on constant fluid and started Cardizem 120, lying down my heart rate was mid 60's-low 70s standing and walking the highest it got was like 87. I thought it was the Cardizem. Now I wonder if it was the constant fluid. First day out of hospital, I woke up and my heart rate was 120 lying down. And I've now upped the Cardizem to 240 but still my RHR starts high in the morning(90s - low 100s) and by night gets to maybe high 70s, low 80s. This wasn't a problem before the Cardizem, my resting heart rate has always been fairly good. Is this part of the POTs?
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