RunnerGirl

Actually, stress (both emotional and physical) CAN elevate cortisol to the levels you noted. Also, as another poster suggested, cortisol levels fluctuate quite dramatically throughout the day in an typical healthy person. (Morning readings tend to be higher than evening readings, so it's important to view your results in that context.) One or two isolated elevated readings are not cause for concern, though your doctor should probably follow up with more comprehensive testing. (A 24-hour urine cortisol test is more accurate in showing what's going on with your levels than an isolated blood test, which shows only the levels at that moment.) In my own case, I have had numerous serum cortisol tests with levels beyond the normal range (sometimes quite substantially). I'm a recreational marathon runner, and elevated cortisol levels are not uncommon in endurance athletes. In short, both physical stress (exercise, illness, etc.) and emotional stress DOES increase cortisol levels, though the elevation should be relatively temporary. That's why it's important to test 24-hour levels, since any of us could have high readings at any particular moment. The 24-hour test will "average" the peaks and valleys and show if you're truly overproducing cortisol. Good luck.

Jackie: ABSOLUTELY no problem to e-mail me directly - anytime. I'm at dlademan@comcast.net. BTW, I wasn't offended on the pill-cutting issue, not in the slightest. I understand your concerns about not getting consistent dosing. I think Goldicedance and I were just trying to reassure you that it was something you could reasonably do with an doctor's OK. (Unfortunately, e-mail isn't always the greatest medium for communicating and things can come across as terse or defensive or whatnot when it was never intended to be that way!) I, too, hope I didn't offend with my response. :-) Again, feel free to write me direct any time! Best to you!

I second what Goldicedance says. The doctors who have told me to cut pills are include: 1) a hyptension expert at Cornell U. with lots of experience in finding the right mix and dose of meds to controll BP and 2) an excellent EP with experience in both IST and dysautonmia. Apparently, he has several pediatric cases who MUST have the lower dose and it's common to split pills to achieve a 'pediatric dose.' Jackie, of course run it by your doctor first - but it's a fairly common practice to cut pills, not just for dose tweaking but also, as Goldicedance says, for cost savings purposes. Good luck!

Jackie: I TOTALLY understand your concerns about the SSRIs. After my horrible experience with Prozac, I was very resistant to trying again - even though my doc assured me that most of the side effects could be mitigated by starting with a much lower dose. But I finally gave in. Like you, I'd been using xanax to try to manage the anxiety-related symptoms - with very little effect. And I, too, used this as ammunition in my 'war' to convince my endocrinologist and my first cardiologist that my tachycardia was not anxiety related and I wasn't having classic panic attacks! (Amazingly, out of the literally dozens of docs I've seen since all of this junk starting happening to me, ONLY ONE - my psychiatrist - never had any doubts that I had something physiological going on, not psychological! He finally called my endo and discussed my case with her, and dissuaded her of the opinion that I needed to be treated for an anxiety disorder.) The Xanax will take the edge off - just barely - but it does nothing for my tachycardia, bp spikes, sweats, etc. I have to say I feel better than I've felt in a long while on the Prozac - and I'm now down to just one .25 mg Xanax, which I take at night to help me sleep. My anxiety is much diminished and my episodes of tachycardia and ectopic beats have become less frequent. Coincidence? Perhaps - but I'm going to stick with this regime for a while and pray things continue to go well! Good luck, Jackie, and let us know how the doc visit goes. And if you decide to try another SSRI, just take it slow and know that we'll be here for support!

Briarrose - Thanks so much for your response. I'm very glad to hear the Betaxolol seems to be working well for you, without any noticeable side effects. Yes, it does sound like you're a lot like me - being very sensitive to medications - given those low doses you're on. I know it will sound strange, but I'm on 5 mg of Prozac right now (I think the lowest therapeutic dose for depression is 20 mg!) - and I honestly think it's helped "reset" my system a bit. Granted I've only been on it for a month or so - but if there really is something related to brain chemistry causing my strange bouts of tachycardia (they've ruled out just about every other organic cause), perhaps the slightest "tweak" of the seratonin levels and other neurotransmitters could make a difference. Time will tell, as I've had 'remission periods' before, without medication. Hard to say if the Prozac is responsible for this latest string of good days! Jackie - I noticed your comment about beta blocker dosing. Yes, definitely talk to your doc about taking down your dose, if you feel a little sluggish. The smallest pill for atenolol is 25 mg (I think) - but you can get a device at your pharmacy to cut your pills in half, or even in quarters. (I helps if the pills are scored, of course.) As I noted above, my doctor suggested I should quarter a pill to get to the right dosing. Apparently, particularly for people who have the hyperadrenergic forms of dysautonomia, just a very small dose can inhibit the effect of adrenaline and mellow things out for us. Also, I remember you have some significant anxiety symptoms. I know the Lexapro didn't work for you, but have you tried another SSRI? This might really help. I think the key is to start with a very low dose and SLOWLY work your way up to where you want to be. I know I tried Prozac a few years ago - and my doctor started me out on 20mg. By day four, I was absolutely beside myself with anxiety and jitters - and I had a splitting migraine-type headache that was unbearable. I discontinued the medication and threw the unused pills down the toilet. I decided to try it again just recently - and this time I was smart - I stared on 2.5 mg (again, quartering a 10 mg pill) and have worked my way up to 5mg. I feel a positive difference already and didn't suffer any negative side effects. Good luck to everyone!

I, too, have been prescribed both a beta blocker and an SSRI for symptoms that mimic POTS. (I still do not have an official diagnosis, but have many of the symptoms of autonomic dysfunction, though blessedly they have been mild for the last several months.) My cardiologist says both are suitable treatments and while some people try one or the other first (I'm currently only trying the SSRI for now, holding off on the beta blocker), there should be no problem with taking both together for most people. For Briarrose: How are you doing with the 5 mg of Betaxolol? This is the one my doc suggested for me, and also recommended a 5 mg dose. Said I might even want to quarter the pill at try 2.5 mg for starters. I'm very sensitive to meds and my HR at rest is very low (when I'm not having symptoms) because I'm an endurance athlete. Thanks!

<<Yes, I know where Crofton is. I also went to grad school in the DC area--College Park.>> Go Terps! :-)

Hi, Katherine! Well, we're neighbors, of sorts! I live in Crofton, MD - about 15 minutes inland from Annapolis. I never know whether to say I live outside of DC or Baltimore! I guess since I spend more time in DC (and went to graduate school there), I feel a bit 'closer' to it. (Just got back from running the St. Patrick's Day 10K there, actually!) I'm sorry to hear you also suffer from these irregular beats - but, yes, I agree it's comforting to know others have them and manage to live with them. I've researched heart rhythm irregularities extensively (and have also seen three separate cardiologists since my problems started). It's taken me a long while to get to a place psychologically where I can accept what I've been told all along - that, while uncomfortable and frightening, these things are BENIGN! I've also realized just how common they are. I finally confided to a woman in my gym that I was struggling with these problems - only to find out she had been through a similar experience about five years earlier. She even had an EP study, just to ease her mind. I know some doctors will deny a connection, but I'm convinced these irregular beats have something to do with hormonal fluctations/status. I don't think it's coincidence that these tend to be more prevalent in women. My cardiologist also says many of her patients with palpitations are young, otherwise healthy women in their late 20s/early 30s who suddenly feel these odd sensations. I have to believe its somehow related to changes our bodies undergo as we age. RunnerGirl

Julie, I share your disdain for heart rate monitors, as I, too, get 'wigged out' when I see my rate higher than it should be! Of course, having one helped me prove to my cardiologist (who thought I was having panic attacks) that I was suffering from some sort of hyper beta-adrenergic sensitivity. As a recreational athlete, I had always used the 'percieved exertion' standard in my workouts, until I started noticing heart rate irregularities. I bought a heart rate monitor and was STUNNED to see how my heart rate (on certain days) would SKYROCKET to 150 or 160 within a minute or two of beginning a run! I told my cardiologist about it and requested she do a stress test. Fortunately, my heart was "acting up" that day, and when I stood up for the test, my HR went from 60 or so to over 100. And I hit 140 bmp within two minutes of commencing exercise! (Remember, I'm a marathon runner! It's supposed to take me a long time to hit this level!) Well, I had no trouble completing the five-stage Bruce stress test, but my heart rate reached 196. As I was calmly chugging away on the treadmill, I said, "So, do you think I'm having a panic attack right now?" She was stumped, but consulted with an electrophysiologist in her practice who was the first to mention Innappropriate Sinus Tachycardia to me. I still don't have an official diagnosis, but I clearly have some elements of IST and POTS. Fortunately, the symptoms wax and wane and I have more good days than bad. I did inquire as to whether there was any risk with my HR being so high on certain days, and whether I needed to monitor it. The docs assured me I was fine. (This was after an echo and a thorough history had been taken, of course.) I continued to train with the HR monitor for a few months, but realized it was having deleterious effects on me psychologically. So, I finally decided to trust the doctors and ditch the monitor. While I know there's something very physical that drives these symptoms, I do think that fixating on them (at least in my case) can make them worse. So I've gone back to my old "perceived exertion" method of monitoring my workouts! RunnerGirl

Hi, Geneva! Yes, I consider myself quite fortunate to still have good exercise tolerance. I haven't been officially diagnosed, but I am in a protocol at the NIH for pseudopheochromocytoma - another form of dysautonomia, from what I'm able to gather! I have symptoms that seem to overlap with both pseudopheo (very labile blood pressure, for example) and POTS and Inappropriate Sinus Tachycardia (IST). My symptoms are mild compared to many others - but I still have bad days when my HR will just go haywire with little or no exertion. I think I tolerate this better than some because 1) my blood pressure doesn't seem to plummet the ways others do - in fact, I have a hypersensitive response to stress and it will actually soar at times; and 2) I am frankly used to having my heart rate at 180 from all the running! (The fact that on bad days it will hit this level from climbing a little flight of stairs is frustrating, but it doesn't wipe me out the way it would someone who is not used running for hours with a HR this high.) Does that make any sense?! Anyway, I actually live outside of Washington, DC. I went to Austin just to run the race! It was my first time to Austin and I had a wonderful time! The weather was spectular for running (sunny, cool, and dry) and the people were so friendly and supportive. I hope to be back next year! I sympathize with your concerns over the irregular beats and what your doctor says truly resonates with me. Honestly, it took me SEVERAL trips to the ER to convince myself that what I was feeling wasn't life threatening. It actually got to the point where I'd walk in and say, "Hey, it's me again, I know I'm not dying and NO, this isn't a panic attack - but hey, can someone just hook me up to an EKG because my heart's doing something funky again!" Going in with this attitude helped a lot! Here's to palp free days ahead for all of us! RunnerGirl

Goldicedance, You're right - it seems PACs and PVCs are more problemmatic for some people, and I'm sure they are terrible for someone with full blown POTS. In my own situation, I tend to feel the irregular beats LESS when I'm standing or exercising (though I certainly do get them from time to time during my runs) but MORE when I'm actually sitting or resting quietly and my heart rate is quite low (50-60 bmp). It's very unnerving to be quietly reading a book and feel these odd sensations. I get several variants - sometimes it's just a brief 'hollowness" in my chest/throat area - and I almost have the sensation that I need to cough. These will come as frequently as every few beats at times, but I've learned to live with them. The scarier variety is when I feel a run of them - and I get this fluttering sensation - it usually stops within a few seconds, but these terrify me. I know I'm either getting multiple ectopics or a brief run of atrial tachycardia, atrial flutter, or perhaps even AFIB. These rapid-fire episodes thankfully occur less frequently than the ectopics. I'm fascinated (as well as very sorry, of course) that you continue to have rhythm distrubances even with a pace-maker. I confess I'm quite ignornant of this aspect of cardiology. I thought the pace-maker would enforce a nice, regular sinus rhythm. I didn't realize you could still have ectopics with one. Did you have an ablation of your sinus node? Curious, if you don't mind my prying - RunnerGirl

Hi, Elaine. Just wanted to let you know that you're definitely not alone with those horrible palpitations. I have frequent ectopic beats, too - a separate issue from my ocassional out-of-the-blood sinus tachycardia and "hair trigger" response to exercise. I've had all the basic cardiac tests, and my heart is structually normal. I know it's scary, but if your heart is structually normal, these odd beats really are of no concern. If it makes you feel any better, I just ran the Motorola Marathon in Austin, TX a few weeks ago and I'm still here! And I went through a period this summer where I was getting irregular beats every day for hours on end, sometimes several per minute. If you don't want to go the beta blocker route yet (they are sometimes only mildly successful in supressing these extra beats and they can cause some negative side effects), I would second EarthMother's suggestion about trying a magnesium supplement. My cardiologist also suggested this. It noticed a mild improvement, but should note my dose is very low - only 250mg/day. Also, the gentlemen who posted above me about his wife is right - virtually everyone gets ectopic beats from time to time. Unfortunately, some of us just seem to feel every darn one of them, whereas others will go the entire life with never having any of those odd sensations! Best of luck to you. Try not to worry - that only makes 'em worse! :-) RunnerGirl

"He said, if we had looked at my adrenaline level during the car ride to the highschool, my lab work would have been normal." This is precisely my situation, too. In fact, I have had my adrenaline levels tested numerous times (via blood and 24-hour urine screens, as part of a workup for pheochromocytoma, an adrenaline producing tumor), in the middle of feeling very symptomatic, and the levels are always normal. My doctor explained the situaton very much like yours did. Our systems generate ABNORMAL responses to NORMAL levels of adrenaline - probably because of the hyper-reactivity of the receptors in our sympathetic nervous system. (In the case of pheo, the body is reacting NORMALLY to ABNORMALLY high levels of adrenaline.) I suppose that's why beta blockers are sometimes useful - they don't reduce adenaline levels, but rather reduce the receptivity of our systems to it. Anyway, just wanted you to know you're not alone! Hope you're feeling well today! RunnerGirl

Jackie, I have read your story and marveled at the similarities between my case and yours. Thank you for reaching out to me, as the others have done on this website. I hate that anyone has to experience this, but it does help to know I'm not alone. Tomorrow is a big day, as I head to the NIH for one last chance and solving the riddle. I, too, take heart that if NIH cannot figure me out, perhaps as EarthMother suggests, my body itself will someday find equilibrium again. I know I feel much better than I did when the symptoms first came on in full force. So there is some hope for natural healing... It's interesting that you mention your symptoms came about after taking a calcium supplement - a seemingly innocuous substance! I mentioned earlier my excessive consumption of soy. My symptoms were at their very worst when I was eating soy protein shakes and energy bars during the last few weeks of training for a marathon in Fall 2002. This is when my heart when crazy for the first time and I wound up in the ER. I didn't know soy was bad for thyroid patients, but in my quest to figure out why I suddenly starting having "panic attacks" and racing, irregular heartbeats, I starting researching ANY and all possible connections. What had I done differently in the weeks leading up to the onset of my hyperbeta adrenergic episode? I thought of the soy and immediately found all of this literature on soy as a "neuroendocrine disruptor." I cut the soy supplements from my diet, and did notice an improvement. But I still suffer from these episodes of autonomic and/or hormonal upset (tachycardia, PACs, BP lability, anxious/nervous/weak feelings, night sweats, cold extremities, etc.). It's hard to know what role, if any, the soy played. I've been coping so far without medication, save a small dose of xanax to help me sleep (.25 mg before bed). But once I get through the NIH testing, I will be anxious to try to treat the symtpoms with either an SSRI and/or a beta blocker. Doctors have been suggesting both to me for some time now, but stubborn me wanted a diagnosis before I set about treating my symptoms. I'm getting tired of fighting and just want to feel better - consistently - so I feel like it might be time to try the medication. Speaking of which, does anyone take the beta blocker Kerlone? Also, what SSRI's have people found to be most effective? I have both Lexapro and Prozac from my psychiatrist, but haven't yet decided which to try. (He's very open to my suggestions and has been very active in helping me find answers to my health problems.) I suffer from both the physical symptoms of anxiety AND the mental anxiety generated over the persistent worry over the symptoms. It's a bad cycle and I need to break it. Any suggestions? Thanks, again, Jackie - and everyone else - for your kindness and insights. RunnerGirl ps. I, too, find that my faith and prayer has held me together in these difficult times. I know God has let these trials come into my life for a purpose, and He will see me through it.

Denabob and EarthMother, Thank you both for your kind (and wise) words. I have often queried my doctors as to whether this could be thyroid-related. In the countless bloodwork and scans I've had done to date, the thyroid is the only thing that is ever abnormal. And when my labs are in the normal range, no doctor is ever willing to attribute symptoms to the thyroid. (Only one cardiologist speculated that I could have some sort of hypersenitivity to thyroid medication, but otherwise the thyroid has been dismissed.) Frankly, endocrinologists (of which I have seen a half dozen since all of this started) seem EXTREMELY wedded to lab results. (ie, If the labs look good, your heart palpitations, anxiety, etc. can't be caused my your thyroid. Ah, to have a nickel for every time I heard that!) But yes, WHY did I develop Hashimoto's hypothyroidism? WHY does my body feel the need to attack something that far from being foreign in it, is actually a master gland designed to keep everything operating smoothly? Very good questions that the present state of medicine doesn't seem equipped to answer. I have a theory - and absolutely no way to prove it - that my excessive consumption of soy protein (bars, shakes, nuts, etc.) may have caused my hypothyroidism. (For those of you who are hypo, try Googling "soy" and "thyroid" and see what comes up. Very scary.) In this instance, I can discount the saline breast implants I mentioned in another post, as I was diagnosed prior to surgery. Denabob, you said I sound like an intelligence person - I thank you for the compliment but I think it's less intellect and more stubbornness that's gotten me this far! I simply refuse to accept that a perfectly healthy woman in her early thirties suddenly gets stricken with these distressing symptoms - and there's no answer, no cause, no diagnosis. "Just treat the symptoms" - another phrase I've heard countless times. But I don't want a bandaid, I want a cure! Of course, now that I've been down so many paths - save the NIH - I am starting to slowly accept that a bandaid may be all I have. I'm not yet ready to declare myself a medical enigma - but I think if NIH can't come up with a diagnosis, that will be inevitable. And I'll start trying out the different bandaids... Again, I can't thank you all enough for welcoming me here. I will certainly share any insights I gain from the NIH with you, along with my friends over on the pheo board. I spent a lot of time over there over the last year! Praying that our good days outnumber or bad ones, RunnerGirl

Wondered if you all had seen this article, which discusses some theories as to the causes of dysautonomia: http://heartdisease.about.com/cs/womensiss...ysautonomia.htm Has anyone else heard of the link between ANS dysfunction and breast implants? I'm well aware of studies showing links between silicone gel implants and certain connective tissue and autoimmune disorders (ie, SLE, RA, etc.) but this is the first time I've seen a reference to implants and dysautonmia. I've had saline implants since 1998. Onset of my symptoms was about a year and a half ago, some four years after my surgery. If I thought my erratic HR and BP, and other unexplained symptoms - anxiety, night sweats, insomnia, etc. - could be fixed with explantation, I'd have the surgery tomorrow. Sad to think that a fit of vanity could have cost me my long term health... I know it's a rather personal subject, but I'm wondering if any other women here have (or had) implants. If you're comfortable writing about it, I would be grateful to hear your story...

Nina, Thank you so much for the very informative links. I see that Dr. David Goldstein at the NIH is one of the lists noting doctors with specialities in ANS dysfunction. I believe he's also involved in the pseudopheo work at the Institute, so I think I'm heading in the right direction by going to NIH. I know at least one of the tests you mention - catecholemines - will be performed as an initial screen when I get to NIH next week. I've had several plasma metanepherine tests, but never the plasma catecholemines test. Again, thank you for taking time to post to a newcomer with such helpful information.

Thank you for your response, Futurehope. I am actually going to the NIH next week for the first round of tests under their "pseudopheochromocytoma" protocol. I clearly have some sort of hyperbeta-adreneric sensitivity going on, though I (thankfully) have no biochemical evidence of a pheochromocytoma (adrenal gland tumor). My understanding is that they rule out other causes of a patient's symptoms, including dysautonmia, so hopefully I will have the appropriate testing done there. I also believe NIH has a protocol studying various dysautonmias, and it would possible for me to be referred out of the pseudopheo testing and into the dysautonomia testing if my symptoms are indicative of this. I'm keeping my fingers crossed. I'm just so desperate for a diagnosis. I'm sorry to hear this syndrome has taken a toll on your activity levels. For me, the physical symptoms have been tolerable, but I haven't felt myself in about two years. In addition to the wild swings in HR and BP, anxiety, and night sweats, I have had insomnia and strange hot flashes. My extremities are chronically cold - I always chalked that up to being hypothyroid and/or having a relatively low body fat. But now I'm wondering if I have poor temperature regulation related to a disturbed ANS. Again, thanks for welcoming me. I hope you can get back to your previous activity levels at some point. Running will wipe me out on bad days, but it still has helped keep me sane during this journey!

...could this be dysautonomia?! I'm a 33-year old female recreational marathon runner. No known health problems other than hypothyroidism. Starting having bouts of sinus tach at rest - sometimes with frequent PACs, just to spice things up - a little more than a year ago. Episodes would sometimes be accompanied by feelings of unexplained nervousness/anxiety. Sometimes not. At the same time I started training with a heart rate monitor, and noticed that my HR would soar immediately upon commencing exercise and also generally be too high given my level of exertion. *But only on some days.* Other days, it would behave normally. Fortuntately, it was "acting up" for my exercise stress test. I completed the 5-stage Bruce test with no problems (HR reached 195 and BP was 150/85 at peak), but the cardiologist noted that I had a "a sinus tachycardia that seems above that expected for such a fit and conditioned young athlete." In short: excellent exercise capacity, no ischemic changes - but rate is high. After consulting with an eletrophysiologist in her group on my case, my cardiologist concluded that it was likely I was born with an oversensitive sinus node. This explanation did not sit well with me - because the onset of these symptoms was just in the last year - and it did not explain why I would be fine one day and "off" the next. It also didn't seem to address the anxiety component. Concurrent with a cardiac workup - that included the stress test noted above, numerous EKGs - all normal except for some showing a rather pronounced sinus arryhthmia - an echo (normal) and an event monitor showing sinus tach and nothing more sinister than PACs - I also underwent a rather extensive endocrine workup. My thyroid had reverted to hypo when these symptoms first presented themselves, but they have continued even as I returned to a euthyroid state. I was also worked up for pheochromocytoma several times, as I also experience labile blood pressure and night sweats. I should also note that I have been seeing a psychologist almost since the beginning of this process. Of course, panic attack was high on my cardiologist's differential diagnosis list - at least until she saw the inappropriate sinus tach on my stress test. Knowing the history and presentation of my symptoms, my psych has always believed as I that this is not being caused by a primary anxiety disorder - though I will be the FIRST to admit that my symptoms have CAUSED me a great deal of anxiety. I will go for periods (days, sometimes weeks) where everything seems normal - my RHR in the evenings will dip to the 40s (where it should be for an endurance athlete) and my heart will respond appropriately to excercise. Then, I'll go through a period (several days) where everything is off - the HR will be 20-30 beats higher than where it should be given a particular level of activity. The simply act of climbing stairs will send it to 170 or so. No pain or SOB - just a real "hair trigger" response. Does this sounds like inappropriate sinus tach (IST) or some other form of dysautonmia? The latter was suggested to me by both an electrophysiologist and the pheo expert I consulted, once it was determined that my adrenaline levels were, in fact, normal. My understanding is that in this condition, one has an ABNORMAL response to normal levels of adrenaline, whereas pheo involves a normal response to ABNORMAL levels of adrenaline. Oversimplification, I know, but that's the way it was explained to me. What I fail to understand is why this sensitivity is present at some times, and not at others. If one has IST or a hypersensitivity to adrenaline, must they have it chronically? Or can it wax and wane as mine does? I wouldn't describe my events as "episodes" - but clearly I have good days and not so good ones. Also, I thought that fatigue and exercise intolerance were hallmarks of IST. The high heart rate doesn't seem to seriously impair my exercise tolerance, though I obviously run stronger on my "good days." Would be very grateful for any insights some of you with confirmed diagnoses could offer. I've been to dozens of doctors - including a $14,000 workup at the Mayo Clinic - and never once did anyone mention POTS or dysautonomia there. But the more I read, and the more doctors rule out organic causes, the more I believe this is what I suffer from. Many thanks!