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AdjustingMySails

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    I LOVE catching fireflys on summer nights, rain on a rusty tin roof, pistachio ice cream, country spring peepers, chunky cable knit sweaters, NYC in May, white orchids, musicals, sand between my toes, sweet 'lil Russian matryoshka nesting dolls ....

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  1. The 10% of pots patients are of the hyper pots sort is a reference from a recent research article written by Grubb and his team published in 2011, not a number of my own volition. However, Grubb--and others--agree that there are likely many undiagnosed cases of pots out there, as so many are misdiagnosed..... Truth of the matter is that there are so many unknowns and uncertainties about pots, heck there are even some neurologists that "don't believe in pots," so I agree that testing and diagnostics for pots has a long way to go. In the meantime, I find that often it's most constructive to focus on what is known about pots and treatment for it that is proving to be successful. Otherwise, we can find ourselves in a tailspin of speculation and queries that truly have little bearing on the quality of our lives day in and day out.
  2. Hi there! I have hyper pots and have been taking Welbutrin for almost two years now. Before that I was taking Cymbalta. I, too, have fibromyalgia. The Cymbalta was clinically helping my pots AND fibromyalgia in tandem, but I was miserably gaining weight. I didn't feel "well enough" on Cymbalta for me to stay on it with the weight gain, and at the suggestion of Grubb, I switched to Welbutrin. I experienced signigificant improvement with my hyper pots, but it took some tweaking of the dose to get me there. Also, Welbutrin doesn't do a thing for fibro, so I began taking Savella. For the first time in several years, I was feeling better overall and so for the last two years I've been on both of those meds, although we tweak the dose now and then. The thing with Welbutrin for pots, is that there is this narrow window wherein not enough Welbutrin leaves you ill and too much Welbutrin makes you ill. It's about finding the balance that is just right which takes time and tweaking, but it is well worth it.
  3. Hi again... After my posting last night, I was worried that I gave a muddied explanation, so I'm glad to hear that some of you found benefit in it. Sorry if it sometimes seems in my posts that I get a little "excited" about helping others understand pots. I've been an RN for the last 13 years and for three of them I worked as a nursing instructor, so "talking teachy" just comes naturally..... Whomever made the comment about potsie's not all fitting into a box, you're spot on! As is the case with many medical disorders and diseases, one's illness is very personalized, and so in many situations generalizations truly can't be made. I think we all agree and readily acknowledge-the medical community alike--that there is still substantial room for understanding and treatment for pots..... A wee bit more about pots and orthostatic hypotension--based on what I've read in a few of the posts for this subject, I'm thinking that I may have confused a few of you here. I was trying to convey that the principle feature of pots is orthostatic intolerance--symptoms of lightheadedness, fatigue, palpitations, nausea, diminished concentration, trembling, near fainting, and fainting--as well as the presence of excessive increase in heart rate on standing---not hypotension. However, I wasn't saying that hyper potsies can never experience hypotension--as they do. And, now and then I do, too. However, hypotension is not the hallmark of hyper pots. And, as someone mentioned (issie, perhaps), because hyper potsies typically have a normally mod to high blood pressure, when theirs drops, it drops into what some refer to as "normal range," not markedly low, as in 80/40. In other words, a typical sitting BP for me may be 158/84 with a resting heart rate up to 120 or so, and when rechecked one minute after standing, may be about 168/98 with a heart rate in 140's (on meds, used to be much higher). When I'm standing there, I will feel lightheaded, get clammy skin, feel fainty, and sometimes will have to sit to prevent fainting. So it's obvious that the near syncope and syncope that I'm experiencing is not the result of orthostatic hypotension, but of poor oxygenation to my brain due to constricting vessels. heck, I have fainted while already lying down (I asked Dr. Grubb if that is even possible, as I wasn't propped up on pillows in bed, I was lying down on one pillow trying to rest when having a pots flare up. He explained that yes, fainting was from the tight vessels in the brain cutting off blood and oxygen flow to the brain--it's a hyper pots thing.) However, if I were to keep standing (providing I haven't fainted in the first four minutes--I'm a fainter) for some time--perhaps fifteen to twenty minutes--I may (not always) experience a drop in blood pressure--though not a big drop, perhaps around high 140's/high 70's-- as venous pooling occurs. Hyper potsies can have "lazy" vessels, too, vessels that lack good tone, that have an inability to maintain adequate tightness--thus, greater-than-normal amounts of blood pools in the lower body the longer you stand, and quite understandably the more blood that accumulates in the body, the less blood is available for circulation decreasing the pressure within the vessels. All this can translate into pre-syncope symptoms and syncope. (And, for whomever asked why at the end of her tilt she has sudden drop in BP--this is the very purpose of tilt tests, as the nature of the test is to see if one's body can "handle" standing, which one can if they don't have significant pooling. That's why--as I've been told--hyper potsies tend to "crash" at the end of a long ten minute Imagine a garden hose: You can turn in on full blast and the water pressure inside the hose would be very high. You can turn down the faucet and even though the diameter of the hose didn't change, the amount of water flowing through it did, so the water pressure is lower. That's why the drop in blood pressure--hyper potsies can experience this. But--and I quote from an article written by Grubb and his team from the Circulation Journal published by the American Heart Assoc, "It should be noted that many patients with orthostatic intolerance will not demonstrate orthostatic hypotension. Instead, they may display no change, as small decline, or even a small increase in pressure."...... See, a pots diagnosis isn't made based solely on a patient presenting with orthostatic hypotension, as there are other autonomic dysfunctions that cause such hypotension out there. Rather, pots involves far more than simply heart rate/blood pressure issues, as you all know so many other body systems are involved--digestion, urinary, inner temperature control, etc.... What's important to realize is that peops with hyper pots will have abnormally increased norepinephrine levels, and such is not present in neuropathic/partial dysautonomic pots. Even though the "high" rate for diagnostic purposes changes per institution, the fact remains that diagnosis of hyper pots is not made solely on norepinephrine levels--that is only a piece of the puzzle, as other symptoms are specific to hyper pots differentiating it from neuropathic/partial dysautonomic pots (i.e. history of gradual, progressive onset of symptoms, anxiety, significant tremor, cold, sweaty extremities when upright, 50% have increased urinary output when upright, orthostatic hypertension (increased blood pressure upon standing, migraines, and strong family history of similar symptoms). All of this is considered when a diagnosis is made, not just the serum norepinehrine levels. It's like this: If you notice one afternoon that you have a headache and you feel a little fevered--like you're coming down with something, getting sick--and you check your temperature and it's 102.9. A fever of 102.9 doesn't automatically mean that you have Tuberculosis, as you have to look at other symptoms--cough, night sweats?? 102.9 doesn't automatically mean that you have appendicitis--abdominal pain, nausea, vomiting?? Even though having a fever is characteristic of both above mentioned infections, the other symptoms offer clues as to what infection process is going on in the body. Pots is much like that--in the case of pots, a diagnosis of hyper pots can't be made solely on one norepinephrine level. That's enough for now....
  4. Oh hon, I get how you feel..... I would like to enjoy venues like fairs and amusement parks with friends, but like you, prolonged standing, heat, exhaustion, all make them dreadful places that I wanna love, but hate at the same time. Well, I have two little kids who love to go to such places in the summertime, and if not for giving in to my insecurities about what others would think if I were use a wheelchair, I would miss out on the fun. Like you, I'm able to get up now and then, but definitely need to be able to sit down when I inevitably get to feeling icky from it all, and I worried that people who see me riding in a wheelchair looking perfectly healthy--as you know how much we get the classic "but you don't look sick"--get up and start walking around will think I'm faking it. Well, let me tell you something that I friend of mine told me that finally convinced me to let go of what everyone else may think. Anyone in there right mind whom sees you riding in a wheelchair among young friends your age and having fun, even getting up now and then and then having to sit back down, will know that a teenager wouldn't just sit in a wheelchair at the fair, at an amusement park, at a shopping mall, at whatever just for the fun of it. No, anyone in their right mind will assume you're ill and need it, fair and square. And anyone whom thinks--or insinuates--otherwise, that you're a faker, well they're very shallow and you shalt not be concerned with them anyway. I say, do whatever it takes to have fun when you feel well enough to do it. If that means riding in a wheelchair now and then to do it, then so be it. If that means pushing around a rollator walker when you need it, then so be it. All of us potsies know that tomorrow we may not feel well enough to go to the fair--even in a wheelchair--so if you can do it today girl, then do it!! You know what I have on the back of mine to keep it light and fun--a sign that says, "My other ride is a Beamer!" You only feel inferior when you give others permission to make you feel that way.....never forget that, hon!
  5. peregrine: You mention speech issues with hyper episodes?? Do you mind elaborating/sharing there? .......... Although I've been followed the DINET forum hit and miss for the last several years now, I'm newly registered to participate and contribute to the forum. So, if this has been addressed, pardon me, I've just missed it. BTW, I have hyper pots, thus my query.... Does anyone else find the autonomic flushing of such hyper episodes itself to be very uncomfortable, akin to pain?? I get flushing on my face, ears, neck, chest, back--and even a time or two, but just a time or two in the last 12 years, on my abdomen and upper thighs. I have had flushing like this last anywhere for perhaps an hour or so to several hours, and I find it very uncomfortable. Does anyone else experience this? Sometimes, I'll experience such flushing on only one side of one my body, and it's not simply something that I feel, as it's observable--red and hot to the touch, and notably can be seen on just one side of of my chest, back, abdomen, and thigh. Has anyone ever had flushing like this?? Has anyone found anything that relieves the discomfort?
  6. Hi there! I am new to this forum, but am certainly not a stranger to hyper pots. I was "officially" diagnosed with hyperadrenergic pots six years ago (diagnosis after several tests, including a serum norepinephrine level--or noradrenalin as some of you refer to it ) after walking around with a "neurocardiogenic syncope" diagnosis for 12 years before that (diagnosis per multiple failed tilt tests during those years). I am one of Grubb's hyper pots patients. Yes, we all have "orthostatic issues"--but that term by nature of pots physicians simply means "an intolerance upon assuming an upright posture with a heart rate increase of 30 beats per minute (or exceeds 120) that occurs within the first 10 minutes of standing and relief of these symptoms by lying down. Low blood pressure does not comprise the "pots definition". WE DO NOT all have drops in blood pressure. Some actually have increases. Case in point: I for one, experience either no change in blood pressure or an increase in blood pressure within minutes of standing, as well as a significantly increased heart rate up to 140's or 160's depending on the day (even though I'm on meds, Grubb is tweaking them, they need tweaking now and then) within minutes of standing, and I am one of the hyper pots patients that frequently faints--complete black outs. The fainting is caused--NOT by drops in blood pressure--but because of an increased pressure and resistance in the blood vessels on the brain that decrease the blood flow and with it the amount oxygen flow. The brain's reaction to inadequate blood flow, is fainting. I'll explain better now..... I just want to point out that there is a very DISTINCT difference between hyperadrenergic pots and neuropathic pots (characterized by previously healthy patients with a sudden onset of symptoms, often secondary to other disorders/diseases). That's because the very root cause of the symptoms of tachycardia is VERY different (I'm not referring here to the "Idiopathic cause of POTS, as that's still up for debate and research.) Yes, as someone mentioned, "hyper pots patients do get as "lightheaded and fainty as other pots patients do," but what causes them to feel lightheaded and faint is different. I would just like to remind you that the M.O. for pots is orthostatic tachycardia--better known to all of us as increased heart rate within 10 minutes of standing--thus the "OT" in POTS. To say that hypotension is the M.O. for pots is a sweeping generalization, as such is only the case with the most common form of pots--neuropathic pots--wherein pooling of blood in the lower extremities and abdomen with prolonged upright position leads to a drop in blood pressure and the body's response to such is an increase in heart rate as a way to bring it back to normal. The changes in vital signs in this form of pots is a pysiological problem, in other words the body is failing to do something mechanically that it's supposed to do. In hyper pots, which only comprises 10% of all pots patients, the changes in vital signs that occur with standing (increase in heart rate and typically a normal or slight increase in blood pressure upon standing) is a neurally-mediated issue, in other words, there is a defect in "messages" being communicated within the nervous system itself that result in the hyper pots symptoms. That's where the norepinephrine levels come into play, as such is a chemical that is necessary for these "messages" to properly flow within the nervous system for the body to respond to changes to itself. In a healthy body, the flow of these chemicals within the nervous system (catecholamines, norepinephrine being one of them), "tells" the body what it needs to do to keep itself stable in order to keep enough blood circulating to the the vital organs--brain and heart--for maximum healthful functioning. Norepinephrine is supposed to be inside cells to do it's job, but in hyper pots, the messages aren't getting communicated properly, because the norepinepinephrine can't get in the cells (because of a defect in the "message relaying part" of the nervous system) and so norepinephrine that can't get in these cells, is in the blood, not where it's supposed to be in high levels. That's why people with hyper pots have increased norepinephrine levels when they have their blood tested (serum). By the way, Grubb's latest research (Cardiology Journal, 2011) notes levels greater than or equal to 600 is considered diagnostic of hyper pots. So, with this "chemical/message system" isn't working properly, too much norepinephrine in the blood stream triggers one's heart rate to increase and one's blood vessels to constrict, and so the pressure within the vessels increases and less blood flows through, which decreases the amount of oxygen that can flow to the brain (so you get dizzy and fainty). So, Hyper pots patients get dizzy and fainty--Sure thing. From hypotension ( low blood pressure)? Nope. In contrast, as I mentioned above, in the other form of neuropathic pots, the problem is that the body cannot increase it's blood pressure to keep enough blood supply to the vital organs with position changes, like standing, because of a mechanical problem with the blood vessels inability to constrict to do so. The message part is working properly in this sort of pots, it's just that the body's peripheral vasculature (blood vessels) are not. So, there is a FUNDAMENTAL difference between this less common form of hyper pots. All of us pots patients share many similar symptoms, but there is a place where similarities stop abruptly, and, it's in the cause of orthostatic symptoms. As Grubb has explained pots is not a single condition, but rather a group of disorders that result in similar symptoms (from Cardiology Journal, 2011). Pots obviously has its fair share of mysteries and hopefully as more of them are unraveled, the easier pots will be to nail down and treat! Here's hoping!!
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