RunnerGirl

<<but sometimes they never figured out why, out of the blue, all of a sudden, these young people got sick. most of them were very athletic.>> Morgan, you are so right. Thank you for sharing this. I am definitely one of those people that seemed to get sick out of the blue. One day, I'm completing a 20-mile training run for an upcoming marathon. The next, I'm in the ER with an erratic heart rate and strange panic-like feelings. That was two years ago. I STILL haven't been given a truly satisfying answer as to precisely WHAT (we know there is/was some sort of autonomic distrubance) or WHY - but I have improved over time and I am very close to being 'normal' today as defined by my perception of my health prior to my first trip to the ER. Of course, I got "sick" very fast but my recovery was slow and subtle. I still have days where I feel "off" - but the sensation is mild and short-lived compared to how it was when I first fell "ill." After a basic cardiac workup and a various endocrine testings (for pheo, carcinoid tumors, etc.) was negative, I fought very hard with my young female cardiologist to take me seriously and not brush me off as an anxiety case. (Yes, even female doctors can harbor certain biases!) I began training with a HR monitor and noticed there were times when my HR would skyrocket (up to 150 bmp in the first minute of commencing a run). I insisted my doc give me a stress test so she could see what was happening. Only then - when she observed my HR and couldn't chalk it up to deconditioning (I was in peak marathon shape at the time) - did she realize I wasn't having "panic attacks." I actually looked over at her during my stress test (when my HR reached 140 bmp after 2 minutes of minimal exertion) and said "Do you think I'm having a panic attack NOW?" My doc admitted she was "at a loss." She referred me to the EP in their practice - who, fortunately, was more experienced AND had seen some cases of other young, athletic people with my symptoms. His opinion is that I had/have a mild form of IST driven by a hypersensitively to adrenaline. I have some orthostatic symptoms, but mostly of the hyperadrengic kind - my HR will accelerate rapidly with movement (simply rolling over in bed will cause a jump when I'm having a spell) and standing. BP is also rather liable and let's just say I'm no stranger to the dreaded PACs and PVCs! Anyway, sorry to digress with a repeat of my case, but I wanted Very Blue to see that there are people who have had sudden onset symptoms and improvement over time. Not everyone is this lucky and there was a time when I felt like I would never get better. But I kept fighting and I kept exercising - even when I felt symptomatic and my HR would be at 180 or 190 when it should have been at 160 or 150 for the pace I was running. (Of course, I had all the appropriate tests to ensure my heart was structurally normal and I was not in danger.) I really believe my fitness level has helped in my recovery and also helps mediate my symptoms. Of course, that doesn't explain WHY I got sick when I did. Which gets me back to Morgan's point: I have finally accepted that I will never know why this hit me when it did. After seeing literally a dozen doctors and having a $14K workup at the Mayo Clinic, I don't think I'm apt to find an answer. Even now, my diagnosis is more a theory than anything else. But I realized at some point my obsession over the WHY was preventing me from living life as best I could. Very Blue, I hope you get the answers you're seeking. But don't make the mistake I made with my relentless pursuit. Live life as best you can each day. RunnerGirl

Hi, Gayla. Any chance any of your meds (other than the hormones) could be causing your flashes? For example, I experieced hot flashes when I was on a low dose SSRI last year (Lexapro). I also experienced significant night sweats. The doctor said it was highly unlikely the meds were causing these symptoms, since I was on such a low dose (only 2.5 mg/day). But as soon as I discountined the meds, both the night sweats and the hot flashes abated. Good luck in finding answers. (And, of course, it certainly never hurts to have that thyroid checked!) RunnerGirl

<<I'm just saying that you should strongly consider getting help from a pyschologist to help you through this process. Coping with illness is hard.>> Well said, Nina. There is nothing scarier than when your body "betrays" you and when you lack a definitive diagnosis. Regardless of the underlying cause of our illnesses or symptoms, we can all benefit from talking to a professional during both the diagnosis and treatment/healing phase. Even though autonomic dysfuction is a true PHYSICAL phenomena, I strongly believe PSYCHOLOGICAL factors (such as stress, anxiety, and depression) can and do exacerbate symtpoms. Just a fervently as I would suggest one NOT allow themselves to be 'brushed off' with an anxiety diagnosis, I would argue just as strongly that we recognize that anxiety can be an outgrowth of autonomic dysfunction and we should treat that as aggressively as we treat our racing hearts, liable blood pressure, and other symptoms. Good luck to all struggling with both the physical and mental aspects of this disorder. RunnerGirl ps. Veryblue, by the way, I have a wacky autonomic nervous system and I'm STILL an "awesome athlete! Start focusing on what you CAN do, not what you think you can't. I'm not suggesting your symptoms are 'in your head." But maybe you'll find some of them are not as dibiliating as you think they are. My psychiatrist was excellent in helping me make this distinction: Are the SYMPTOMS themselves that dibilitating or is the FEAR OVER THE SYMPTOMS holding you back? For some, the physical symptoms are indeed dibilitating. For others, the symptoms are more a nuisiance and the fear and worry over what they mean is what paralyzes them.

Hi, Gena. Just FYI, I'm an endurance athlete (recreational marathon runner) and my HR is also in the 50s (when my autonomic nervous system is behaving!) during waking hours, particularly in the evenings. When I sleep, it drops into the 40s. So, I, too, had concerns over my HR dropping TOO low with the addition of a beta blocker. Nevertheless, at least three different doctors have suggested I would be FINE taking a LOW DOSE of a cardio-selective beta blocker. Fortunately, I haven't needed to take a regime of beta blockers, though I have taken a small dose here and there when my RH was particularly fast or irregular. Perhaps, as Ernie suggests, you could see about taking the beta blocker on an 'as needed' basis, since your tachycardia is clearly eposidic. On the other hand, a very low dose of a cardio-selective beta blocker taken regularly may not cause your resting heart rate to drop more than a couple of BMP, but may ward off the really bad episodes of tachy before then begin? Just a thought. I would discuss this is more detail with your cardiologist. I'm not suggesting the lower heart rate isn't a real concern. It may be, and your doctor certainly knows best. But if you are a particularly fit individual, as I am, then your lower heart rate is simply the result of your heart being able to pump the same volume of blood as someone with a higher heart rate in fewer beats. In other words, your heart is more efficient. So, your heart rate dropping from the upper 40s to the lower 40s on a low dose of beta blocker would be unlikely to cause you any major symptoms or problems. But someone beginning with a resting HR in the upper 70s (who has a less efficient cardiovasuclar system relative to yours) dropped to the lower 40s would likely experience A LOT of symptoms. Hope that makes a little sense?! :-) I think the key with beta blockers is not as much where your resting heart rate eventually lands with treatment as the MAGNITUDE of the CHANGE in resting heart rate. Small change = fewer side effects. Good luck to you! I know these episodes can be frightening - hang in there! RunnerGirl

<< I will get readings of about 90 something over 60 something, then stand up and get a reading of 120 over 80>> I'm no doctor, but this sounds perfectly normal to me. Blood pressure is in constant flux in healthy individuals and a change of that magnitude is not at all unusual when changing positions. If you are concerned about your blood pressure, I would recommend a 24-hour ambulatory blood pressure monitor that your doctor can then interpret for you. The test involves a cuff that inflates every 15 minutes during the day-time hours and every 30 minutes while you sleep. You keep a log of your activities throughout the day and then the log is matched up against the readings. I had this done and was deemed perfectly normal - even with a reading as high as 165/90 (while driving in DC Beltway traiffic) and a reading as low as 85/48 (while sleeping). This test is often used to distinguish white-coat from true hypertension. Good luck to you.

Good idea, Katherine! :-) I voted, too, reflecting that I have autoimmune (Hashimoto's) thyroid disease. So far, that's it in the way of autoimmune disease and I surely hope it stays that way. My thyroid is trouble enough! My GP says I have one of the most unstable thyroids she's ever seen...

I'm going to save this entire thread and read it the next time I go through a rough patch with my ectopic beats! There's some wonderful advice here! It's easy to be brave and offer great words of courage to others when my own heart rate is beating slow and steady! I know I'm going to need to read my own (and others!) remarks here in the future! I'm very interested in the connection between autoimmune disease and dysautonomia, too, and appreciate the references provided here. I have Hashimoto's (autoimmune thyroid disease) and it seems there are a LOT of other people here who have this an other autoimmune diseases in addition to POTS. Does anyone know if any research institution has undertaken a serious study of the mechanisms connecting the two? Thanks - and steady heart beats and PVC-free days to all! RunnerGirl

Thanks to all of you who have been kind enough to respond with your personal experience in managing the dreaded adrenaline! You've each given me some important insights and I think I may now have the courage to try one or both of the medication classes that have been suggested. I lurk a lot here but don't post very often - largely because I somehow feel wrong about it when my symptoms are so often so much more tolerable than what others here suffer through. (My symptoms were much worse in 2002 - when they seriously thought I might have pheo - so today I count myself blessed that I can function almost normally.) And yet, I am struck by just how many others here can related to the symptoms I describe - symptoms so many of my doctors were stymied by. I can't thank you all enough for being 'there' for me whenever I have chosen to 'speak' or ask questions. This is truly a very supportive group of people and I count myself lucky to be a part of the group. I'll definitely let everyone know if I have any success (or failures, for that matter!) with any of the suggested meds! Thanks, again! RunnerGirl

Morgan: Thanks for your response and the info on Clonidine. Believe it or not, that was actually suggested to me by a professional cyclist I found on the internet who happen to have POTS. His case was a lot like mine, in that when he began training with a HR monitor, he was shocked to see how high (and how fast) his heart rate climbed. For a conditioned endurance athlete, this is just not the norm. I believe he went through the same wringer it seems we've all been through, and eventually got the diagnosis of POTS. I know he used Clonidine (like me, he was afraid of the beta blocker's impact on his exercise tolerance) and I believe his symptoms eventually resolved and he's now med-free and back in competition. Maybe I should look into this. Hope you've found an alternative med to help manage your hypertension. My BP has wild swings, but is mostly normal, so we don't need to specifically target our treatment at that at this point. The HR (and anxiety, to be honest) is the most troubling of my symptoms. Gina: Sorry to hear you suffer from the same cluster of symptoms I have, but I'm happy you have a diagnosis. From my experience and that of many others here, that's half the battle. I hope you find success in managing your symptoms with the calcium channel blocker. Keep us posted! As to your question about what testing I had to determine I'm hyperadrenergic, I guess I should say all testing I've had (including 24-hour urine catecholomines and metanepherines, plasma free metanepherines, and numerous other tests that measure biproducts of adrenline at both the supine and upright position) show I'm actually putting out NORMAL levels of adrenaline. The key is that my symptoms are indicative of a hyperadrenergic state, and the theory is that my body is simply hyper-responsive to these normal adrenaline levels. I know some people with dysautonomia actually have abnormal adrenaline levels, but my case seems to involve the receptors of my autonomic nervous system being overstimulated by normal adrenaline levels. Again, this is the theory. And after pursuing just about ever option available to me for a more firm diagnosis (NIH, Mayo, a dozen doctors locally), I guess I'm willing to accept a 'theory' in leui of a real diagnosis! Thank you both for responding!

I realize eveyone is different here and responds differently to meds. But I'm curious as to what meds are working best for those with the hyperadrenergic (excess adrenaline) forms of dysautonomia? I'm basically med-free at the moment, but my doctors have recommended two different courses of action to assist with my symptoms (which include high exercise heart rate, frequent ectopic beats, sinus arrhythmia, periods of sinus tach at rest, wide HR and BP fluctuations - ranging from high to low, and unexplained nervousness/anxiety bordering on panic when most severe.) Compared to many on this site, I have mild symptoms, hence my ability to get away with no meds for as long as I have. However, after a very long period of "good days" where I was essentially normal, I have been waking up in the mornings with an elevated HR (not tachy but 80-90, which is quite high for me, since my normal resting HR is in the low 50s to upper 40s due to my athletic conditioning). I've been offered two different treatment options by my docs - a low dose beta blocker or an SSRI. I have Atenolol, Kerlone, and Toprol XL in my medicine chest, along with Lexapro and Prozac. I don't know which to try, andmy docs are no help! They all have differening opinions of each, and have basically left it up to me to experiment or simple continue med-free. Does anyone with symptoms similar to mine have any suggestions regarding any of the above mentioned medications? Many thanks, RunnerGirl

Ernie: Did your doctors rule out pheochromocytoma in the case of your brother? And what about you? I assume since you know you have high catecholomine levels that you've been tested for pheo, yes? I would suggest contacting the NIH. They are presently running a clinical trial on something called 'pseudopheochromocytoma' - basically for people who exhibit symptoms of pheo, but who do not have the tumor. (As an aside, the docs an NIH insist on a relatively new test called the PLASMA FREE METANEPHERINE TEST to rule out pheo, since 24-hour urine tests are known to render false-positives and false-negatives.) There several doctors working on the protocol, including Dr. Goldstein, who I know has evaluted several folks on this board. My understanding is that people with this so-called "pseudopheochromocytoma" are often found to have adrenal hyperplasia - or enlarged adrenal glands. If you didn't want to go the NIH route, there are some endocrinologists who do specialize in pheo and other diseases of the adrenal gland (Cushings, Addisons, etc.). But, given that thyroid disease and diabetes are much more common, it is sometimes difficult to find these docs! If you happen to be anywhere near the Baltimore/Washington DC area, I can provide you with the name of a good endo who knows pheo and adrenal gland issues quite well. Good luck and feel free to e-mail me directly if you need any other info on either the NIH or my local endo. Best to you!

<<Hi, I am having lots of irreg beats-PVC's, PAC's, runs, flutters, etc over the past day or so. enough to where it is scaring me... I have been through this thousands of times but each time it feels a little different and somehow "worse" than before.>> Wow, Danelle! I could have written this exact post SO MANY TIMES! I, too, get weird spells when my HR is just so irregular - lots of ectopic beats, lots of rate variation (when I inhale it will speed WAY up and when I exhale it will low WAY down). I've been the the ER several times, and each time I always say, "Look, I know I have benign rhythm problems, but this one just feels different." And every time, I get told the same thing: You're fine. PACs, PVCs, sinus tach and sinus arrhythmia - but nothing sinister. Go home and stop stressing yourself out. Try to stay calm when you have these episodes - easier said than done, I know. And rest in the reassurances you've no doubt been given many times. If you have a structurally normal heart (and I'm sure you've had a echo to determine this is the case, right?), these rhythm problems are harmless. Uncomfortable, yes, but completely harmless. If you haven't tried it already, maybe a low dose of beta blocker or magnesium supplementation might help? I take 250 mg of MG daily (which is actually a very low dose) on the advice of my cardiologist, who says MG can reduce the frequency of PACS and PVCs. I have noticed a slight improvement in mine since starting the MG. Good luck and know that you're not alone! And, if it makes you feel any better - I've run two full marathons since I started having my heart rhythm problems. So I wouldn't worry about leaving your kids behind! :-)

Morgan: I realize this is perhaps the most optimistic take, but I did wonder about the spontaneous cure you alluded to. Specifically, I'm wondering if you're taking beta blockers or other meds that might need to be reduced and/or discontinued, if perhaps your body might have reset itself. Wouldn't that be awesome!? :-) I am by no means cured of my tachycardia and BP spikes (I, too, have a hyperadrengic form of dysautonomia, blessedly mild most of the time) - but I have definitely improved over time without meds. Meds, of course, have been suggested to me, but I was told it was my decision and my symptoms were never so intolerable that I couldn't function. (For me, the worst part was anxiety and worry over what was causing all of this - and once pheo and other "organic" diseases had been satisfactorily ruled out, I felt like I could live with the symptoms most of the time.) I'm sure had I elected to take a beta blocker, and my heart and bp decided to stop acting up and go into "remission" (which it seems to do more often than not these days) I'd be experiencing a lot of the symptoms you've described: weakness, very low HR, etc. I would essentially be overmedicated. The fact that you are "less tolerate of being up" could mean your BP is dropping too low, rather than being too high for once. And yes, I think bodies do adapt to HPB over time, so even if your BP is now NORMAL, you could be experiencing LOW BP symptoms, simply because your body is used to a higher baseline. I sure hope you're in "remission!" Good luck in getting some answers. Keep us posted!

Hi, Julia. Just want to second what Steph said. Synthroid has a very long half life and is very ' forgiving' of isolated missed or doubled doses. I remember reading somewhere that for some non-compliant patients, a single, large dose of thyroid hormone replacement can be given on a weekly basis. Frankly, having been slightly overmedicated for thyroid before, I wouldn't want to chance this sort of treatment! But, apparently, it is used safely and effectively. That said, it is certainly best to be very consistent about dosing, as even minor fluctuations in thyroid hormone status can impact how we feel. I happen to believe that people with POTS or other autonomic disturbances (particularly the hyperadrenergic variety) are probably more sensitive to these fluctuations than others. I know my heart rate is extra sensative to exercise and very 'hair trigger' when my thyroid hormone levels (T4 and T3) are in the high end of the normal range. Good luck to you!

Veryblue writes: <<But if that bull is true then where are the people that have recovered! Where are they? I just want to hear from one person who was gone through this and is normal again!>> First of all, I'd like to offer a theory - a theory that presupposes that MOST people who have recovered fully from POTS, IST and/or another type of dysautomomia simply don't make a habit of frequenting support boards on a regular basis. Sure, there are folks that will no doubt visit from time to time - out of the kindness of their hearts- to OFFER the very thing you seek: HOPE and a true success story. But let's face it - probably most of us who come here are still SEEKING support, answers, advice, etc. on how to cope with an existing condition. That's the nature of support boards, I'm afraid. Second, there are clearly folks who ARE on this board that have had extended periods of remission, or a MAJOR reduction in symptoms (Deb's story is a great example of that), and lead full, active, and productive lives. While I never received a formal diagonsis of POTS, I had several hallmark symptoms of autonomic distrubance, which began spontaneously in the Fall of 2002. Like you, I considered myself bright, young, healthy and athletic - at age 31, I was training for my second marathon at the time, working a six-figure salary job, and enjoying a vibrant social life. As you've probably seen in the quality of posts on this site, MANY of us here are well-educated, relatively young women who, prior to falling ill, enjoyed success both personally and professionally. Whether we're attorneys, computer whizzes, college students, nurses, or full-time homemakers and moms, we ALL lost something when we became ill. In short, your situation is not unique. I'm not trying to take away from your personal experience here - I'm just trying to get you to understand that you are not the only "smart young lady, athlete, fiancee, aspiring professional" to have her world turned upside down by a chronic illness. And having experienced this doesn't make you a "freak." In an instant, and without any warning, my world changed dramatically: ER trips for a racing (and sometimes irregular) heart beat, waking up in the middle of the night with panic-like feelings, blood pressure spikes, sweats, etc. Being told I might have a rare adrenal gland tumor. Countless medical tests for heart disease, pheochromocytoma, carcinoid, MS, etc. A $14,000 workup at the Mayo Clinic. And, of course, intimations that this was "all in my head." Those were definitely some of the darkest days of my life... ...and yet, today, thank God, I'm so much better. It was a slow, but largely spontaneous, recovery. I have loads of unfilled prescriptions for various beta blockers and SSRIs. I would try a super-low dose of each, feel worse, then decide to go with my gut instinct: to let my body heal itself. Not everyone has that option, as their symptoms are simply intolerable and their quality of life is nil. But I was fortunate in that I was able to tough out most of the bad days. I do still have some unexplained bouts of tachycardia and ectopic beats here and there; still some unexplained waves of nervousness; still some bad days. But I've run two marathons in 2004 already. And I love my life - even more than my pre-illness one! The single biggest difference between now and pre-illness is that I cound EACH and EVERY GOOD DAY as the ultimate blessing. While I NEVER want to relive those dark days, I DO consider myself lucky that I gained such a perspective on life at such a relatively young age. Good luck to you in your own journey... RunnerGirl

My pleasure, Nina. Looks like several of us here have had the pheo work-up. My endo is a former NIH researcher, where she specialized in pheo, before going into private practice in early 2003. (I suspect she now sees more thyroid disease and diabetes than pheo!) But pheo is definitely something to rule out when one exhibits hyperadrenergic symptoms - particularly because in some/most cases it can be completely cured by removing the tumor. This is really what they thought I had for a period of time when my symptoms were at their worst. But my tests were always negative - even right after an episode where my BP was quite elevated. Mayo then gave me the atypical anxiety disorder diagnosis after ruling out several other things. I still don't know what I have/had, but I'm just grateful that my symptoms are better right now! Best to you and the others on the boards today - and have a great weekend!

Another document to check out re: pheo testing and the plasma free metanepherine test. I linked this under a thread a few weeks ago, but it's long since been bumped off page 1! http://www.ibl-hamburg.com/catecholamine/l...enders-2002.pdf Ann, if you're out there, I'm wondering how your own pheo testing is going. Hope you've been able to get some answers. Best, RunnerGirl

Hi, Brwneyedchica. Just wanted to clarify something from your post and perhaps offer some information concerning your question. You write: "the results of my 24hr urine were indicative of my having extremely high levels of plasma metanephrine." I'm a little confused as to whether you had an actual blood test done, or was your cardiologist inferring from high 24-hour urine metanepherines that you must also have high plasma levels? The "plasma" refers to a blood draw, and the only way to determine your PLASMA metanepherine levels is to have a blood test. As other posters have indicated, high metanepherine levels (in either blood or urnie) CAN be indicative of a RARE neuroendocrine tumor called pheochromocytoma. However, there are other things that can cause elevated levels (certain drugs, caffiene, anxiety states, intense exercise, etc.) That said, if you want the most accurate test for ruling out pheochromocytoma, ask your doctor to order the plasma FREE metanepherine test. This test is relatively new - developed by NIH - and is the most accurate test for ruling out pheo. Check out: http://www.vhl.org/newsletter/vhl2002/02bipheo.htm. The test is now available through commercial labs, but the blood sample needs to be sent to the Mayo Clinic for processing. If you need any more details concerning the test, I can provide them. As Calypso noted, the NIH is presently conducting a trial in something they call "pseudopheochromocytoma" - for folks that exhibit all the classic symptoms of pheo (including episodes of moderate to severe hypertension, anxiety, tachycardia, sweating, anxiety, etc.), but who do not have a tumor. (The NIH uses the plasma free metanepherine test noted above as the "gold standard" for ruling out pheo). I went through a phase a few years ago where I was having rather severe hyperadrengic symptoms and I was worked up for pheo several times. Interestingly, my urine and blood tests were always well within the normal range for biproducts of adrenaline. So, apparently, I'm hypersensitive to normal amounts of adrenaline. I think this is the case with many folks who have hyperadrengic variants of dysautonomia. Thankfully, my symptoms have diminished greatly, but I'm still going through the pseudopheo protocol at NIH. I have no official diagnosis, though I know I have some sort of episodic autonomic dysfuction, as my heart rate and BP are extremely liable. And, although I'm in outstanding physical shape (marathon runner), my heart rate will sometimes have a very hair-trigger response to exercise. Anyway, sorry for rambling, but I always like to put my crash course in pheos to good use to help others when they find themselves going down this path. Chances are, there's another explanation for your high levels. But it's definitely worth ruling out definitively with a plasma free metanepherine test. Good luck and keep us posted.

For those interested in the best biochemical test to rule out pheo - often necessary in the process of diagnosing POTS, IST and other dysautonomias - check out: http://www.ibl-hamburg.com/catecholamine/l...enders-2002.pdf RunnerGirl

Nantynannie: I have been worked up for pheochromocytoma multiple times. Keeping in mind that these are extremely rare tumors - most often presenting with the major symptom of episodic or sustained HIGH blood pressure - I WOULD recommend the following. If you've only had one 24-hour urine test and you did not have an episode during the collection, you may want to consider a repeat test while (or immediately after) you experience symptoms. Some pheos secrete catecholomines episodically, while others do so continuously. In the instance of the former, it is possible to get a false negative. If your cardiologist REALLY suspects pheo, however, I would recommend you ask him to order a plasma FREE metanepherine test, a relatively new and highly accurate blood test developed at NIH. This test is reportedly 99% accurate in diagnosing pheo, as it is able to measure the bi-products of these tumors even when they are NOT active. The blood draw can take place in a local lab, but it needs to be sent to the Mayo Clinc for processing. I can provide you with more specific info if needed, as I've been through this test multiple times, as well. It is very unusual to start doing CT scans and MRIs for pheo if there is no biochemical evidence of one. The diagnosis is usually made via blood or urine tests, then the search for the sometimes elusive tumors begin. My docs have definitely ruled out pheo in my case, and their hypothesis is that I simply have a hypersensative response to NORMAL levels of adrenaline. I think many folks with the hyperadrenergic forms of dysautonomia have this situation. The NIH is also conducting a trial for a syndrome they call "psuedopheochromocytoma" - for folks who have all the symptoms of pheo but do not have the tumor. It's unclear what mechanisms cause this - a mind-body connection or some physiological issue - that's part of what they are hoping to learn from the study. Sorry for rambling on, but I do hope some of this info is helpful. Best, RunnerGirl

Julie: Thanks for those two posts above. Our cases sound quite similar. I, too, have hyper beta-adrenergic spells doctors first told me were panic attacks. I insisted they were physiological episodes, NOT triggered by any emotional upset or other psychiatric stress. Amazingly enough, it was the psychiatrist I sought in desperation who finally convinced the medical docs that I was not presenting with panic attacks. He was the one who got the ball rolling on having me worked up for pheochromocytoma (which, thankfully, it turns out I do not have) and other rare disorders that present with symptoms of tachy, bp spikes, anxiety, etc. I've since been given a variety of theoretical diagnoses - mild IST, hyper beta-adrenergic syndrome, pseudopheochromocytoma, and, of course, anxiety disorder - not otherwise specified. My EP says I simply have an overly sensative autonomic nervous system, or a hypersensitivity to adrenaline. Fortunately, my symptoms wax and wane and I have more good days than bad. I've run two marathons this year, in fact, so I'm counting my blessing - particularly when I read of others who are so ill they are unable to work. Still, I so relate to the fear that you describe - worry about when you'll have another "attack." I went through a period where I was afraid to fly - not because I have aviophobia, but because I didn't want my heart to 'whack out' at 35,000 feet! Glad you found the right combination of meds to help. I'm still managing med free, but I do have my scripts for Lexapro and Kerlone filled if I go through a rough period again. Best to everyone here. RunnerGirl

Morgan (and others who noted having similar 'episodes' high BP and other scary symptoms clustered together) - Just wanted to double check that you've been worked up to rule out pheochromocytoma and carcinoid? I know several other folks here (particularly ones with hyper beta-adrenergic featurers of POTS) have undergone these tests, as I have. Forgive me if you've posted this info before. Again, just wanted to make sure. I know pheo is rare, but it's definitely worth a 24-hour urine test check your metanepherine, normetanepherine and catecholomine levels, since you do exhibit some classic pheo-like symptoms. Carcinoid can also be tested via a 24-hour urine test of H-5IAA levels. Best wishes to you. I know how frightening these episodes can be. RunnerGirl

I get the same thing, and I would describe the sensation just as Briarrose did. My event recorder showed many PACs, a few PVC, and plain 'ol sinus tach - all benign in the context of a structurally normal heart. Apparently, everyone gets these ectopic beats from time to time. Some of us are just unlucky enough to 1) get them more frequently and/or 2) feel every gosh-darn one of them! If you're at all concerned, best to get a 30-day event monitor and try to capture one of the episodes. The doc will then be able to tell you for sure what sort of arrhythmia you're having. But if I were a betting woman, I'd lay money that you're getting a string of PACs or PVCs - very uncomfortable and scary, but essentially harmless. Good luck!

I, too, have experienced elevated BP with my tachycardia. This led to my being worked up for pheochromocytoma (rare adrenal gland tumor that almost always causes episodes of hypertension). All my tests for pheo have come back negative, as have numerous other tests for an "organic" cause of my tachy, epidoses of anxiety and elevated BP, etc. My BP elevations are never sustained, so I've not been diagnosed with hypertension, nor have I been told I need to take medication to treat it. (A 24-hour ambulatory BP monitor revealed I am essentially normotensive.) I also don't have an official diagnosis of POTS, but I have been told by my EP that I have a hypersensitive autonomic nervous system - something short of full-blown POTS or Innapropriate Sinus Tachycardia (IST). I have bouts of sinus tach, frequent ectopic beats, elevated exercise HR, etc. - but other times I'm completely normal. There are some variants of autonomic disturbances that are hyper beta adrenergic in nature - that is, we over respond to normal levels of adrenaline. I think this would cause both elevated HR and BP, given the effect of adrenaline on those variables. My docs have told me a low dose beta blocker will smooth out this hair-trigger response with minimal side effects, but so far I've been managing without any meds. Looking forward to other posts on this topic. I wonder if it's not as rare as we think. Best, RunnerGirl

Me: defense / aerospace industry consultant. The only viruses I'm exposed to on a regular basis are of the computer variety! One theory I've seen regarding the apparent fact that a disproportionate number of people with dysautonomias come from the health care profession - particularly nurses - is that such people are FAR less willing to accept traditional 'brush off' diagnoses like anxiety or panic disorders. Of course, both anxiety and panic are real disorders - but they are, of course, different from POTS and IST, though symptoms can often overlap. As many of us have experienced first-hand, doctors not familiar with POTS, IST or the other dysautonmias may chalk up a symptom like tachycardia (once a basic cardiac workup rules out any structural heart disease, and thyroid and other 'organic causes' are ruled out) to anxiety. Someone with some degree of medical knowledge may be more inclined to question this diagnosis, push for a second opinion, assert his/herself with doctors, etc. and ultimately get the RIGHT diagnosis. RunnerGirl