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Everything posted by StacyRN

  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
  15. Naomi, have you ever taken your bp just when you stand up? It doesn't necessarily go really high, but what happens with POTS is that usually the systolic pressure (top number) goes up just a little, but the diastolic (bottom number) can go up significantly... mine will go from lying down 110/70, to standing up 120-130/100-115. So the pulse pressure narrows, it's a result of sympathetic overshoot when we stand up.
  16. This is for Train Boys Mom Rocks: I read your post saying that you were just shy of the 600 pg/ml norepi level for Hyperadrenergic POTS... I want to clarify that this is not the level for Hyper. POTS, this is the norepi level that is typical in any type of POTS. See this article: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ "We often measure plasma norepinephrine levels in both a supine and standing position (at least 15 minutes in each position prior to blood sampling). The supine norepinephrine is often high normal in patients with POTS, while the upright norepinephrine is usually elevated (>600 pg/ml), a reflection of the exaggerated neural sympathetic tone that is present in these patients while upright." Those with true Hyperadrenergic POTS (or Primary Hyperadrenergic POTS) usually have levels of 1,000 or more pg/ml.
  17. Apologies, Sophia, I didn't mean to annoy you, point taken. Hope you feel better. Stacy
  18. Also, a narrow pulse pressure means that the top number (systolic) lowers, and the bottom number (diastolic) rises, so the numbers get closer together, and it's hard for the heart to pump blood out to the body. Like a bp of 120/70 has a wider pulse pressure (pulse pressure of 50), but a narrow pulse pressure would be more like 115/100 (a pulse pressure of only 15!)
  19. I have to differ with this a little... how do you know your bp is dropping so low it's not measurable?? My bp won't read MANY times when I am standing up, and it may actually be HIGH! The reason it won't read is that my pulse is going so fast, and it is so weak and thready from the blood draining out of my upper body when I stand, that it can't capture all the heart beats, and thus cannot measure your blood pressure, so reads Error. Watch the little heart beats on the monitor... if they aren't steady, start to skip, and then even stop altogether before it reads Error, it's because your pulse is so thready the monitor can't pick it up.
  20. Actually, BP has a lot to do with POTS, NOT just heart rate escalation. Dysregulation of the autonomic nervous system includes changes in vascular tone, which makes the blood vessels not respond to standing up like they are supposed to, by constricting to get the blood flow up to the heart and head. In the PD (partial dysautonomia) type of POTS (90% of POTS patients have this type), bp tends to drop and heart rate escalates when standing. It always seems to be worse in the morning, which is why the doc ordered her to check it in the morning. In the Hyperadrenergic type of POTS (10% of POTS patients), heart rate escalates AND bp rises, especially the diastolic pressure (the lower number), and sometimes the pulse pressure gets very narrow, like going from 120/70 lying down, to 115/98 standing up. This happens a lot to me, I have the hyperadrenergic type, where our bodies put out too much catecholamines (specifically norepinephrine). POTS is SO much more than just simply a high heart rate, or else being on a beta blocker to slow the heart rate would fix all our problems... but it doesn't. The fatigue, lightheadedness, brain fog, chest pain, etc. is still very real, and very disabling!
  21. I've been on propranolol (beta blocker) for about 10 months. It keeps my hr down, but makes me very tired, so instead of 20 mg they prescribed, I only take 10 mg 3x/day. Clonidine helps me more than anything... if you look it up, it blocks the norepi and epi release, can't remember how at the moment (having lots of brain fog right now...) I've actually gained weight, even tho I don't eat as much cuz my stomach hurts more, and it feels like all the blood goes to my stomach after eating, especially a bigger meal, or lots of carbs... and then I get lightheaded. But lying around so much and not exercising, as well as not being able to stand up long enough to cook healthy meals so I just eat whatever is easiest (always the least healthy!!) has made me gain about 40 lbs since I got sick a year ago I am SO RELIEVED about the tumor! I just wish they'd finish all the testing, make sure there are no other norepi-secreting tumors anywhere else in my body (called paragangliomas, which is one reason they're doing a nuclear med scan - MIBG - next week), get them all out, and my HOPE is that I will no longer have POTS symptoms and can get back to work! And life! And exercise! I want ME back...
  22. Too low to be hyperadrenergic POTS. Probably the other kind of POTS (partial dysautonomia, PD type).
  23. Oh, I LOVE your posting, Tachy! I love your sense of humor!!! I think the ping pong table remark is great... why don't they just do suping and standing? And have someone there to catch you if you pass out The post-mortem pheo diagnosis is wonderful... the scary thing is, that IS how lots of doctors think! And best of all: "If you've never heard a subconscious groan from an endocrinologist, it's quite an experience" lol!! I know EXACTLY what you are talking about!!!!!!
  24. I wouldn't recommend it, I have hyperadrenergic POTS too, and Vanderbilt said it would make me worse, in fact they did a med trial and it DID make me worse! I was on Zoloft for 15 years before being diagnosed with POTS, went off it for the Vanderbilt study last April, and didn't start it again. I think I've felt better since stopping it. Also, like someone else said, you already have high serotonin and norepi levels, SERATONIN SYNDROME is a real danger... Let us know! Stacy
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