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About StacyRN

  • Birthday 07/21/1960

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    Madera, CA

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  1. I'm thrilled to hear this! I've seen Dr. Karen Friday, EP/cardio at Stanford, and she was the only one who knew about POTS at the time in the area! So to hear that there is an autonomic specialist is outstanding news! Thanks for sharing
  2. Read his articles if you really want to know about Dr. Levine's work, there are at least 4 published scientific journal articles out there. One of them seems to state that if our POTS is not cured by his protocol, that we are not exercising hard enough, long enough, or both. I have had discussions with him by email, and he does not directly answer questions but skirts the issue of it being a cure, even though he seems to state it in his articles. My feeling is that Levine's work does us a great disservice asw it might make our physicians not take our POTS seriously, or look for a root cause of our dysautonomia, because they now feel we are simply deconditioned lazy people. This is SO unfair! Most of us were high-achieving, over-stressed, hard-working, athletes, etc. when we were hit with POTS! Couch potatoes don't get POTS, we do! And I don't have a small heart, and neither do most of us. Exercise is good for all of us, as much as we can tolerate, as becoming deconditioned is harmful to us. But most of us didn't start out that way! I think Dr. Levine's articles seem VERY unfair to us by lumping us together into a group of small-hearted deconditioned people. That is just plain WRONG. To me that is a fact borne out by thousands of us.
  3. You sure sound Hyper POTSy, with your reactions to the meds, etc. I hadn't thought about that our adrenergic receptors might be tuned differently...? Any good articles on that? Have to look it up, thanks! Yes, I'm HOPING Rama responds, because I want to know what research he has... I also have thyroid disease, and didn't know the link between that and higher norepi levels! And about the bp not climbing, it is normal in POTS for it to drop a little, stay the same, or climb a little... usually my systolic doesn't go up a lot, but my diastolic does, narrowing the pulse pressure. But the bp doesn't skyrocket on the TTT usually, although mine did with midodrine! And with SSRIs! Please, let Rama find this thread and give me some articles... his research studies are only done on 15-39 year olds, and I'm almost 51, so don't know how they apply to me... Thanks for this, though, Dana
  4. Actually, Hyper POTS fits more into the Normal Flow POTS category, not the Low Flow... I'm not sure I'm completely a fan of Dr. Stewart's definitions... in fact, instead of them being more advanced, they seem a little more behind the times, at least what I've read today, than the other researchers. Maybe Ram...(I can never remember that name! sorry!) can give me some specific articles that he likes, because the ones I found weren't that convincing to me... Please do, I am open, not closed-minded! But I'm also a critical thinker, and I research a lot... Thanks! Stacy
  5. Or, let me put it this way, my DHPG levels were proportionate to my norepi levels, meaning both were high proportionately. Whew!
  6. Hi Issie! When I was at Vanderbilt for the study, they checked all my catecholamine levels many times, and also my DHPG level. If you have a higher than normal norpinephrine-to-DHPG ratio, then you could have the NET defect. Norepinephrine is released from the nerve cell, and some of it goes into the bloodstream (about 20%, I believe), while 80% of it is taken back up by the norepinephrine transporter, back into the cell, and converted to DHPG, and the DHPG is released into the bloodstream. (I hope I got that right, I have it in a book, but too tired to go find it right now!) Anyway, if the DHPG levels are low, it means that the norepinephrine transporter (NET) isn't taking up most of the norepi and converting it into DHPG. So that would mean the NET wasn't working right, and letting too much norepi into the bloodstream. My DHPG levels were normal, and my norepi:DHPG ratio was within normal limits, therefore Vanderbilt said I was negative for the NET defect. I hope I made sense! Someone else said that they had a saliva test to check for the NET defect! But I haven't heard of that and wouldn't know how it works, unless they can measure DHPG through the saliva...? I take clonidine, 0.1 mg 3 times during the day, and then 0.2 mg at bedtime (or I will wake up in the night with the jitters and restlessness!) I also take propranolol 20 mg, 4 times a day. And klonipin and Ambien at night also, or I can't sleep! Somehow it doesn't kill me, you'd think it would!! I never get low bp though. I have always had low-normal bp, and I get an increase when I stand up and a very narrow pulse pressure, 15-20 mmHg! But it doesn't get dangerously low. My hr when I'm asleep and resting is 55-60, which is normal for the meds I take, but I never feel in danger... I'm more likely to wake up from my Hyper POTS and be restless and nervous, even on all those meds. Thanks for writing, Issie, I really appreciate it! Hope my explanation of NET defect helped! Stacy
  7. Doesn't do a thing for me. I have Hyperadrenergic POTS and do not have low blood volume or low bp.
  8. Ramakentesh, I was told you have some info on Low flow POTS, and a certain doctor who has newer ideas on Hyperadrenergic POTS... could you send me some links to articles on this? I looked on google, but I'm not sure what I'm looking for. According to what I read, I don't have Low flow POTS, I have normal flow POTS, and I get the thoracic hypovolemia with splanchnic pooling upon standing. I know this because abdominal binders help, where compression stockings don't do a thing. I've also twice been diagnosed with Primary Hyperadrenergic POTS, and negative for the NET defect that can cause it. I take clonidine and propranolol. What does the doctor you like (I can't remember his name... Julian Stewart maybe?) say about H. POTS? I would love to hear what you have to say, please! Thanks... Stacy
  9. Yes, narrow pulse pressures don't feel good... it means that the pressure in your heart during the emptying stage,when the blood is supposed to be pushed out to your body, too much of it stays in the heart, making the diastolic pressure higher than it should be.
  10. Only 10% of POTS patients have the Hyperadrenergic type. 90% have PD (partial dysautonomic) type. Actually, 750 pg/ml is a high norepi level, most people don't go up above 500 at the most when standing (non-POTS people, that is!) Although from all the posts I'm reading about K, it sounds more like autonomic failure than POTS, due to the low heart rates, the low blood pressures... those are not part of POTS. Have they checked her for autonomic failure? Hoping for the best for her!
  11. I was in an inpatient POTS study at Vanderbilt for 2 weeks in April 2010. I did have all the catecholamine levels done, supine, sitting, standing; and the urine ones also... extensive testing every day! I also had plasma catecholamines at Stanford in 2009. The first ones were: supine 604 pg/ml, standing 1231. At Vanderbilt they were: supine 300s, standing 1459. I was told this makes me in the 10% of those with Primary Hyperadrenergic POTS. This is within the past 2 years... I was also negative for the NET defect. I am also not helped by florinef, compression stockings, or salt. I do not have aldosterone: renin ratio problems. I do not have decreased cardiac output. Midodrine sends my sympathetic nervous system out of control, as does SSRIs and the usual drugs given to PD type POTS patients. Yet clonidine and propranolol help me and are well-tolerated, and those are the drugs that typically help only Hyperadrenergic POTS. I'm just wondering what the research is behind the person who said that no expert would diagnose H. POTS by norepi levels alone... because I have never heard of any other way to diagnose it, and would like to know where he got his information! Whoever you are, please respond, I'm interested in hearing what you have to say! Thanks
  12. I was told that someone on this forum mentioned that we were relying on outdated research regarding Hyperadrenergic POTS. I was told he said that any good POTS expert would not rely on plasma norepinephrine levels alone for a Hyper. POTS diagnosis. I am wondering where he got his information, and if he has any links to research articles that explain what he is saying. I'm very interested in finding out! Thanks
  13. This could have been me writing this! I do the exact same things. Only in addition to clonidine, I take propranolol.
  14. Narrow pulse pressures are normal upon standing up with POTS
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