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RunnerGirl

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Everything posted by RunnerGirl

  1. I've been on a very low dose of Lexapro (5mg) twice now in the last few years, both times for symptoms related to my ANS disturbance (tachy, physical anxiety generated by my symptoms, and generalized anxiety - ie, worry over symptoms, etc.) I noticed a tremendous improvement in my anxiety and my tachycardia, but the drug had the side effect of giving me near-constant ectopic beats. I didn't realize the first time I was on Lexapro that this was the culprit, since I have been known to get crazy rhythms here and there off all meds. But the frequency and the consistency with which I got them did leave me a bit suspicious. When I weaned off Lexapro for a period of time (mostly because I wanted to have some additional medical tests done that would require I be off SSRIs), my irregular beats were almost nil. And, when I restarted the drug late last year, the ectopics came back as soon as I hit the 5mg dose. Every day. Without fail. Until I stopped the med again. So, all in all, I would give the Lex a mixed review. It definitely worked to tone down my sympathetic nervous system, but for me, the irregular beats (my HR was not fast, just irregular) was an intolerable side effect. The experience did finally convince me that whatever is happening my my body is directly related to my brain chemicals, though, as my HR was so dramatically impacted by the SSRI. I would love to try another drug (my ANS systems are so much better, but I continue to have mild dizziness and anxiety-related issues), but I'm afraid all SSRIs will give me the irregular heart beats. I hope you find something that is a good fit for you! Hang in there! Best, RunnerGirl
  2. Hang in there, Danelle! Everyone here has offered great advice: distracting yourself with light physical or mental exercise, etc. Read back through other posts, too! We've all had really bad flip-floppy days and we have come here for support. Read Earthmother's recent post about ectopic beats and how perfectly normal they are. And before you know it, this rough spot will pass. If all else fails, try my last resort technique: Go to the ER waiting area (assuming it's decent and comfortable and your hospital isn't in the middle of a large urban area where a Monday afternoon might as well be a Saturday night!) and just sit and read a book and have a snack. I will bet dollars to doughnuts your irregular beats will eventually settle down and you'll be able to calmly drive yourself home, never having made it know that you were there for possible treatment. Good luck and rest assured I'll be posting for support from YOU the next time I have one of my bad days! RG
  3. Hi, Tammy. I, too, find Ambien a 'miracle drug' for my occasional bouts of insomnia. I seem to go through periods where for weeks I sleep like a log with no pharmaceutical assistance. Then for another few weeks will I will toss and turn and need Ambien to break the cycle. Like Nina, I have taken it on and off for several years, in varying doses. Sometimes, I can get away with a third of a 10mg pill. Mostly, though, I need at least a half (5mg) to get to sleep. I try to use it sparingly, since there is habituation to worry about. But I did have a period a few years ago when I used it for at least six weeks every night, with a doctor's approval and guidance. Your symptoms sound very similar to mine when my ANS first went haywire - palps, anxiety, insomnia, wired, panicky, etc. I have Hashimoto's hypothyroidism, so we first thought maybe my meds needed to be adjusted. Labs said I was fine, so then we went on to the pheo workup. I assume you have had these tests, yes? If not, it is certainly worth investigating. Pheos are rare, but so is POTS, though I believe the latter is actually more common than the literature would indicate. I was worked up for pheochromocytoma numerous times, and learned quite a bit about the diagnosis process, so feel free to contact me if you need some additional info on this. Have you tried either a benzodiazapine or an SSRI to help with your anxiety? If not, the latter in particular might be a good option, since SSRIs are also frequently used in the treatment of POTS/dysautonomia. SSRIs may cause increased insomnia in the early stages of treatment, but can ultimatley help you sleep by toning down the anxiety and other symptoms. Again, I wish you luck in finding a treatment regime that works for you. Best, RunnerGirl
  4. Lisa: I wouldn't have believed such a tiny dosage (pediatric dose) of a beta blocker could make such a dramatic difference, but I have the same exact experience! I actually take Betaxolol (aka Kerlone), but only on an 'as needed' basis. With less than a quarter of a 10 mg pill, my exercise HR will run about 30 BPM lower than where it is for the same effort level without the 'crumb" of Betaxolol. My resting heart rate isn't impacted as much, but, then again, my resting HR is by and large (at least at this stage of my battle with ANS troubles) pretty normal. Originally, my EP actually perscribed Toprol XL to me at the same 12.5 mg dose you take, but another doctor (who is a fellow marathon runner and understood my concerns about not taking something that would impact my exercise tolerance) felt that the Betaxolol might be better. I know they are both cardio-selective beta blockers, so chances are Toprol XL would be fine for me, too. But I chose the go with the Betaxolol instead. (I sided with the runner! :-)) So far, I haven't had any troubles when I've taken it. Tammy, as you can see, we are all so different. Best thing to do is just experiement (starting with small doses, as others have suggested) and find what works for you. Good luck in finding something that helps you!
  5. I love that we can challenge each other (and ourselves) with this thoughtful exchange of ideas and perspectives. Far from being offended, I am in fact extremely impressed by the impassioned and articulate discussion of divergent views expressed here. In less "mature" forums, this could have degenerated into a series of personal attacks, yet instead we show each other respect by sticking to the arguing of ideas. Thank you to everyone here for your perspective! RG
  6. I think we are not yet at a stage where we can make definitive, bold assertions such as ANS disorders ARE or are NOT caused by mental stressors. The truth is that the etiology of ANS dyfunction remains largely unknown. Likewise, the connection between the mind and the body is also poorly understood. The psychiastrist I consulted during my most symptomatic time was troubled when I tried to make a distinction between physical and mental illness. What he told me is this: The latter is, in fact, a physical illness, different from, say, diabetes only in the fact that the organ involved is the brain and not the pancreas. The brain is arguably the most complex and also perhaps the least understood organ in the body. Why, when the brain ultimately controls the ANS, is it not possible that the same brain chemical changes or disruptions that cause panic and anxiety disorders, or depression, could also manifest themselves in other, purely physical ways - such as disruption of the ANS? I think we do ourselves a disservice in the quest to understand our condition if we completely dismiss this possibility. I, personally, am struck by the similarity between true anxiety and panic disorders (I'm not talking about butterflies before an exam, but rather dibilitating misfirings of the 'fight or flight" response that can and do occur in otherwise normal, hopeful, well-adjusted people) and the hyperadrenergic forms of ANS dysfunction, in particular. I often wonder if the two aren't on the same spectrum of brain chemistry disruption or imbalance. Earthmother raises something about trauma, and what role it may play in our physical health. Again, this gets back to a mind-body connection. I consulted with a hypertension expert a couple of years ago by the name of Dr. Samuel Mann. Dr. Mann is NOT a touchy-feely alternative medicine guy. His background is about as mainstream and conventional as you can get. But in his book, "Healing Hypertension, " he documents patients with severe episodic hypertension, where pheo had been ruled out and panic attack was also excluded. What was similar about these patients: they all had some sort of trauma in their past, and they had repressed emotions surrounding that trauma to become otherwise productive, happy, successful people. In short, Dr. Mann suggests that hidden or repressed emotions can have a profound impact on our physical health - even moreso than the the stressors and emotions we actually acknowledge and feel. Anyway, just more food for thought. I would encourage everyone to keep an open mind about the topic. It's easy to get defensive when someone suggests anxiety could play a role in our illness, as too many of us were 'brushed off" with "it's JUST anxiety" when we sought help for our symptoms. This not only demeans people suffering with ANS disorders, but also those with anxiety (the disease, not the symptom). They may or may not be related to each other, but they are both true conditions that can greatly disrupt our lives. RG
  7. Ernie: I think we've corresponded about these tests before - so please forgive me if I'm repeating myself. :-) As far as I know, the 24-hour urine catecholamine and metanephrine test is used almost exclusively to rule out pheochromocytoma. I've not heard it being used for any other purpose. The 24-hour urine cat and met test USED to be considered the 'gold standard' for ruling pheo in or out, but now the plasma free metanepherine test (developed by NIH) is the new standard. Urine testing has been known to produce both false negatives (if one has a tumor that only secretes episodically) and false positives (various meds and certain foods and beverages can cause falsely elevated cats). With the PFM test, the accuracy is MUCH greater - up to 99% accurate, according to some literature. So, if you get a negative PFM test, you can probably rest assured you do not have pheo. If I remember correctly, you've already had pheo ruled out, yes? If not, it's probably a good idea to have the urine test, but also ask about the PFM test, too. Good luck, RG
  8. This is a really fascinating discussion and I appreciate what everyone has contributed. I think Tearose posted something similar on another thread, but here is my understanding of hyperadrenergic autonomic dysfunction, per discussions with various doctors. One of two things is happening in our bodies: 1) We have a NORMAL response to ABNORMAL levels of adrenaline (ie, our bodies produce too much adrenaline either continuously or upon postural changes, etc. and our bodies are simply responding 'appropriately' to that excess adrenaline with HR and BP increases, sweating, feeling anxious, tremors, etc.) The issue here is WHAT IS CAUSING the excess adrenaline. Sometimes a cause can be pinpointed and treated: an adrenal gland tumor (pheo), panic or anxiety disorders, hypoglycemia, etc. can all cause an excess outpouring of adrenaline. Fix the underlying problem and the excess adrenaline goes away. But for many of us, these conditions have been ruled out, and the cause of our excess adrenaline is idiopathic. Maybe it's a chemical imbalance in the brain, but we just don't know. So, we're left with treating the symptoms, not the cause, since we don't know what it is. We take beta blockers to reduce HR and/or BP, we take anti-anxiety meds to curb those horrible excess adrenaline feelings, we take SSRIs because they may help rewire our brains and mitigate symptoms. OR.... 2) We have an ABNORMAL (hyper-sensitive or over-reactive) response to NORMAL levels of adrenaline. I have had my catecholomines measured on numerous occasions and every time they have fallen into the normal range - even when I've been symptomatic (my BP was 160/90 before one blood draw and I was very tachy). So I clearly fall into this second category. But the issue again is WHY is my body so reactive to adrenaline? Are the receptors in my heart's sinus node and along my sympathetic nervous system more numerous, more sensitive, etc. Do I have an imbalance in my brain chemistry that is telling my nervous system to react this way? There are lots of theories, but the fact remains that we are still left with treating the symptoms of excess adrenaline - even though, technically speaking, we don't have "excess adrenaline" - in these cases, too. Beta blockers, SSRIs, benzos, etc. - things to 'tone down' the reactivity of the autonomic nervous system. All of this is a round about way of saying that it's interesting to know what form of dysautonomia we have, but treatment is still dictated by symptom management. The condition is so poorly understood, in part because, as others have stated, it manifests itself so differently in its sufferers. I look forward to the day when we will be able to pinpoint the cause of our disease (not just the form of it), and ultimately cure it (not just manage it). RG
  9. This also describes me, to a T, Katherine. However, unlike you, I haven't found any particular pattern or triggers to explain the abnormal days. I just KNOW there has to be SOMETHING (hormonal or endocrine, dietary, etc.) that causes my episodes, but I just haven't been able to figure it out and suppose it may be too subtle to ever pin-point. But I do keep trying! RunnerGirl
  10. Two words: FLIGHT ATTENDANT! All that standing, plus the effects of altitude and recirculated cabin air (dehydration, etc.). And the hypersenstivity to stress and anxiety some of us with hyperadrenergic variants get - yikes. Turbulence, obnoxious passengers, delays for bad weather, being prepared for emergencies, scanning for terrorists... RG
  11. I'm sorry you're having to endure so much at one time. May the love of your sons and the friends you have here and elsewhere help sustain you during this trying time. Do your best to take care of yourself, even as others make demands of you. And remember this IS light at the end of this tunnel...
  12. Congratulations on your wonderful accomplishment! And what a worthy cause you have chosen to take on, helping women who are the victims of abuse. Talk about an inspiration! RunnerGirl
  13. Hi, Katherine. I know you have a good EP and he's probably told you this - but it's worth reiterating if only to ease your mind. Bradycardia in and of itself isn't much to worry about IF YOU AREN'T SYMPTOMATIC. If you aren't feeling majorly dizzy, faint, fatigued, etc. while experiencing bradycardia, and it is a transient event (ie, your HR will still respond if you decided, during one of the episodes, to get up and do jumping jacks or run up the stairs again, etc.) - I wouldn't think there would be any cause for alarm. I, too, experience bradycardia along my old friend tachycardia. In part, I think the brady is from my athletic conditioning (everyone likes to cite Lance Armstrong's resting heart rate in the low 30s - both a function of genetics and the phenomenal efficiency of his heart acquired through his training). But my resting heart rate fluctuates tremendously, and has since the onset of my ANS troubles. While I can always tell if I'm tachy, I rarely if ever know I'm brady, unless I happen to check my pulse. That makes me think brady is totally normal for me. In short, no symptoms = no worries, in my book! :-) There IS something called sick sinus syndrome, where the HR can rapidly cycle between brady and tachy. But SSS is usually accompanied by other hallmark symptoms and signs, including a blunted HR response to exercise. (As we know, most of us here have just the opposite - an EXAGGERATED HR response to exercise.) The sinus node is basically shot in this condition and severe cases usually require a pacemaker. Also, just an aside, a sometimes dramatic post-excercise drop in BP and HR can be amplified by beta blockers, even at a low dose. Your body is working hard to maintain a high BP and HR to support your activity level, and stopping suddenly (particularly if the exercise has been especially long and/or intense) can cause the bottom to drop out of both. Blunting the effects of that post-exercise adrenaline (through BB) can make the situation worse. Gradual cool downs (even from something like running a flight of stairs) may help with this. I hope you continue to feel well (save these little episodes of brady)! Keep us posted! RunnerGirl
  14. I also wanted to weigh in here. I have a hyperadrenergic form of autonomic dysfunction. And when I was at my worst, I would have terrible feelings of 'out of the blue' nervousness that sometimes would crescendo into panic. I won't call them 'panic attacks' per se, but for all intents and purposes, that's what was happening, (ie, same physiological response like adrenaline rush, heart and BP increases, sweating, feeling of doom, feeling like I couldn't get a good, full breath, etc.) This feeling was the most horrendous thing I've ever experienced - and were it not for a low dose script of Xanax, I truly think I would have been paralyzed by fear and worry about when the next wave would hit. Somehow just knowing I had something that could take the edge off made the events more tolerable and sometimes I didn't even take med even though I had it. Like others have mentioned here, Xanax (and other benzos) are best used as needed. But I actually was taking it daily for about a year and a half (up to .25 mg three times a day). I often took less, but I did take it regularly for a sustained period of time. I was able to taper off with ease and with no side effects or withdrawal symptoms. If you do not have a history of addiction, if you follow your doctor's prescribing advice, and you taper off the drug slowly if you've been using it regularly (again, under the care of a doctor), you should have no troubles with this medication. It is regulary prescribed for people with acute situational anxiety (ie, fear of flying, public speaking). And some who suffer from panic disorder who cannot tolerate SSRIs find it a life-saver in treating their condition. In hindsight, I wonder if a low-dose beta blocker wouldn't have been better for my particular situation. But the xanax certainly did help get me through the worst of my days when I was very symptomatic. I wouldn't hesistate to take it again if I have a relapse. And I DO keep spares around for those high anxiety situations like turbulent airplane rides! RunnerGirl
  15. Gayle, I'M impressed! Bagging any mountain at that altitude is quite a physical (and mental) accomplishment. I will respond to your personal e-mail, too, but wanted to briefly highlight some of the questions you raised, since I have had others ask me about it, too. In particular, how I am able to have such a good exercise tolerance in spite of my condition. I must emphasize that I have never been diagnosed with full-blown dysautonomia of any variety. My EP calls it a "disturbance of my autonomic nervous system" - something short of full blown POTS. Also, it's not clear if that disturbance is more akin to POTS or to IST - I have features of both - again, in a mild form compared to most here. What IS clear is that I have a hyperadrenergic variant of ANS disruption. When I first became symptomatic, I was in the final stages of training for a marathon. So I was very fit BEFORE the upset - I think that may have worked in my favor, but I guess we'll never really know. Anyway, I starting having very strange panic-like sensations at rest, coupled with sinus tach, blood pressure elevations, and other uncomfortable sensations associated with having too much adrenaline. It was very much like a panic attack - but I knew there was something else going on, as I had other symptoms. Sometimes I would get acute epidoses, but more often than not, I would just have days where I felt very weird. I would wake up feeling strange (nervous, sort of weak, as if I had low blood sugar), and I began monitoring my heart rate, something I never before did. My heart rate would be extremely elevated on the days when I felt 'weird" - like 100 bpm in the morning, lying in bed (WAY high for an edurance athlete, as you well know). And the slightest movement - standing, brushing my teeth, etc. - would send it to 150 or higher. And still on other days, I felt normal and these always corresponded to days when my HR would also be normal. At the same time, also began feeling crappy during my runs (an 8:00/mile started feeling like a full out sprint!) I began training with a HR monitor and was shocked to discover how high my heart rate was going during exercise on certain days. Fast foward through the workup I had (cardiology, endocrine, psychiatric, etc.) After doctors could find no structural problems with my heart, and pheochromocytoma and other endocrine disorders were ruled out, I was told to keep exercising - so I did. I believe that exercising through these bad days also helped me maintain my exercise tolerance. It wasn't always easy, but I had so many reassurances from doctors that I was not going to die if my HR hit 190 or 200 during a 10K run, so I just kept running. I forced myself to run or do some other aerobic exercise, just as I'd always done. I'm leaving out a lot of details - and I am sorry if I'm boring you and everyone else here! But I think I'll wrap just by saying the body is an amazing (if sometimes quirky) piece of equipment and it does heal itself and/or adapt to physical demands. I kept demanding things of my body (before, during and after my "illness") - and I think that's PART of the reason why I have maintained a fairly robust exercise tolerance - even compared to most 'normal' people. That, and, of course, the fact that I did not have as severe a case as others here. Please understand I'm not saying everyone can push their body the way I pushed mine. I did so only after multiple, frank conversations with doctors who understood my situation. And I was never bed-ridden, suffering from syncope, horrible fatigue or pain, or other things that would doubtless have kept me from pushing. It's not lost on me that I'm one of the 'lucky ones' - and I continue to post here to encourage others to hold on to their dreams of getting better - or climbing whatever mountain life puts in their way. I feel strongly, Gayle, that the physical and mental toughness that allowed you to bike at 9,000 feet with dysautonomia - and climb a 14er - will continue to serve you well as you attempt to improve your exercise tolerance now. You may have to simply retrain your mindset to one of the turtle instead of the hare - slow, steady, and consistent. Best wishes to you from someone who admires your accomplishments! RunnerGirl
  16. <<Just wanted to add one more caveat that may or may not apply to you, especially if enjoying a family trip, and what you can tolerate. But if you drink alcohol of any kind, and attempt to do so in Colorado you will probably get very drunk, very fast>> Good point, Steph! I know I tend to feel a tad loopy even after just one small glass of wine on a plane, whereas one on the ground (at sea level here at home in Maryland) usually doesn't phase me. I've always been a cheap date, but I guess I'd be ridiculously cheap if I lived in Denver! :-) RG
  17. Katherine: You'll do wonderfully, I'm sure! I didn't have time to read through everything posted here, but one thing I don't think was mentioned is that the average commercial airliner cabin at cruising atltitude is pressurized to about 8,000 feet. So, your trip to 7,000 feet shouldn't really cause you any troubles, if you don't tend to have any horrible symptoms while flying. Granted, you'll be walking around and exerting yourself on the ground, but after a short period of acclimitization, you should be feeling like you do back here on the flatlands of the East Coast! Incidentally, I am considering hiking Mt. Rainier this summer (14,000+ feet) and I've been doing a lot of reading about altitude sickness. It's very interesting that staving it off it really is about allowing your body time to adapt - about a day or so for each 1,000 feet above 8,000. Even perfectly healthy people have issues with this (as do the very physically-fit - susceptibility to altitude sickness doesn't seem to depend on fitness level, but rather genetics and maybe a bit of luck!) Anyway, enjoy that Rocky Mountain high! Best, RunnerGirl
  18. Hi, Pam. Yes, I am also a participant in the pheo website, though I pheo was ruled out in me (about as definitively as possible, given current state of medical knowledge!) more than a year ago. I mostly lurk both there and here, but post when I feel like I can contribute something, particularly in the diagnosis phase. That was such an ordeal for me, and I vowed I would helps others when I regained my health. If I can save anyone time or anxiety by suggesting a test (even just to rule something out), I try to do that. I think your reasoning concering your belief that your continued hypertension (or hypertensive episodes) is being caused by something other than hyperadosteronism is quite sound. In fact, it very much sounds like the rapid ups and downs could be caused by a disruption in your autonomic nervous system. But since you've already had what sounds like a thorough workup for pheo (did you have the plasma free metanepherine test, or just the 24-hour urine?), maybe it's best to put that to rest and move on. I would still maybe want to do a quickie test for carcinoid, since the cluster of symptoms you have is somewhat suggestive of that. Again, just in case... Thank you for your concerns about and interest in my own heath. I must say, I have never really gotten a definitive diagnosis. But my symptoms have improved tremendously over time. The consensus is that I am/was suffering from a relatively mild form of either POTS and/or IST. I have some symptoms of both, but don't fit neatly into either diagnostic category. My variant of ANS dysfunction is definitely hyperadrenergic, as I get a rise in both HR and BP, have unexplained nervousness and anxiety, and generally enter fight or flight mode for no apparent reason. At my worst, I would have full blown episodes that would wake me up at night, and I would feel very anxious bordering on panic. Now, I have little mini episodes or 'waves' that come over me where I'm just not 100%. And I continue to suffer from bouts of irregular heart rhythms (mostly PACS and PVCS, and I'm convinced I have had short bursts of afib or atrial flutter, too). But I feel mostly normal and if I don't wear a HR monitor when I train, I can convince myself I AM 100% on most days! All of this came about with very little pharamaceutical intervention, so I am tremendously grateful. Again, I truly hope you have some good fortune in finding some answers to your ongoing issues. Keep us posted, OK, and let us know if you need any other info! Best to you! RG
  19. Spirlhelix: I'm so very sorry to hear of your multiple health problems and continued quest for an underlying cause or causes. Some of your symptoms (ie, labile blood pressure) are definitely hallmark signs of some sort of upset in the autonomic nervous system. But that upset could be caused by any number of underlying conditions, and I would be sure my doctor had exercised due dligence in ruling those out before declaring that I had a primary dysautonomia. A few things that came to mind as I read your message: 1) Have you been worked up for secondary causes of hypertension (I'm thinking specifically of pheochromocytoma), or does the doc think your aldosterone issues are to blame for the high blood pressure? 2) The facial flushing, tachy, and GI issues made me wonder about carcinoid syndrome. Has your doctor ruled that out? It's basically a 24-hour urine test for 5-HIAA. Mind you, both pheo and carcinoid are rare, but if symptoms warrant they should be ruled out. Good luck in finding answers (and relief) - and welcome to the board! RG
  20. Steph: Don't give up on your flying dreams! You're still so young - and remember that so many of us do improve over time. There may surely come a day when you won't need to bribe anyone to pass an FAA physical! My fiancee is an airline pilot, and he is one of the few people I know who 1) positively loves his job and (2) makes a makes a very good living. Regrettably, these two things are often mutually exclusive. So keep the faith! :-) RunnerGirl
  21. 1) Name (real or screen, doesn't matter): Screen: RunnerGirl; Real: Daryle (pronounced like the more commonly spelled Darrell or Daryl); I was named after the famous quarterback of the mid to late 60 and early 70s Daryle Lamonica - aka "The Mad Bomber" - who played for Notre Dame and the Oakland Raiders! (You guessed it - Dad wanted a boy!) 2) Favourite book: Classic: Fyodor Dostoevsky's Crime & Punishment; Contemporary: John Krakauer's Into Thin Air (I adore real-life adventure stories!) 3) Favourite film: Oh, that's just too hard! I like everything from heady, intense dramas (the likes of "Platoon" or "Schindler's List") to funny, cheesy comedies (Tommy Boy, The Wedding Singer, Airplane, etc.) 4) Things that make you happy: Running in the sunshine; my fiancee, Dave; running in the rain; long-distance hikes; running marathons to raise money for the Leukemia & Lymphoma Society; international and domestic travel; running half marathons; politics; running alone; running with 50,000 other people; cycling; weight training; kisses from my four-legged canine friend, Dobbin; a good Pinot Noir; eating chips and salsa after a nice long run! (Notice a theme, here?) 5) Something about you that no one here knows... I would like to run - for a national, public office someday!
  22. Susie: I had extremely VIVID dreams while on Lexapro, but not anythingh I would characterize as nightmares. In fact, they were mostly just very real seeming and sometimes a bit strange! I used to joke with my fiancee about not needing to rent movies at Blockbuster, because I had nightly entertainment while sleeping! My understanding is that vivid dreams are a relatively common side effect of SSRIs and that seems to particularly be the case with Lexapro. Maybe your doc to try a different SSRI if the nightmares are too bothersome? Good luck to you! RG
  23. The high heart rate in and of itself is rarely dangerous in the context of an otherwise healthy heart. Also, the formula you cite is just a rough estimation of the average maximal HRs for the average person. Even in non-POTSy people, maximal HRs vary dramatically and are based on a variety of factors - level of conditioning, age, and genetics. I myself have a maximal HR far in excess of what my age-predicted max would be. For peace of mind and in the interest of being thorough, I would probably request an exercise stress test so your doctor can observe this 'hair trigger' response to exercise you've noted. They can see if you are in sinus rhythm and if there are any ischemic changes on your EKG. I would also probably request an echo, so you can rest assured your heart is structurally normal. If all of this checks out, the hyper-reactive response to exercise is very likely a manifestation of POTS and/or IST. Despite my being a recreational marathon runner and in tip-top cardiovascular shape, I also demonstrate a very hyper-reactive response to exercise when I am symptomatic. I have overlapping symptoms of POTS and IST. The consensus is that I have a mild hyperadrengic form of dysautonomia. I say 'mild' because I am fully functional now. I have even run two full marathons with my hyper-reactive heart! I am fine, so rest assured your bout on the treadmill will not damage you. But I would definitely tell your doctor about this. I had to twist the arm of my cardiologist (who told me I was having panic attacks) to give me the stress test. Only when she observed my heart rate on the treadmill did she believe there was something very physiological in nature going on with me! Anyway, hang in there and please follow up with your doc, if only for reassurance. Best to you, RG
  24. Katherine, If you don't mind my asking, what dose of Prozac do you find helpful for your POTS symptoms? As you know, I've had the issue with Lexapro significantly increasing my ectopic beats. I do get them off SSRIs, but I really noticed a major increase when I when I recently bumped from 2.5 mg of Lexapro up to 5 mg - and an immediate cessasion when I took it back down to 2.5 mg. I know Calypso had a similar reaction. It's particularly frustrating, since I noticed a positive difference in my level of anxiety (apart from that generated by the extra beats!) and my 'hair trigger' or reactive heart rate really improved on the Lexapro. So SSRIs definitely do something to rewire my brain chemistry in a way that impacts my hyper-reactive ANS. So, before I write off all SSRIs, I'm wondering if I should give Prozac or Zoloft a go. I know some people have dramatically different responses to different drugs in the same class. I actually have a script for Prozac. I once took it at a starting dose of 20 mg by a well-meaning psych who didn't understand how sensitive I am to meds - and had a horrible reaction. But I tried again about a year later starting at 2.5 mg. I don't think 2.5 mg did anything good or bad and I eventually just went med free for quite some time. I'm wondering if I should try Prozac again, but try to up the dose to 5 or 10 mg. I know I need just enough to tweak the brain wires, but no more! Thanks, as always, for your insights! RG
  25. Amy, Thanks for sharing your Lexapro experience with me. It helps validate my instincts that the drug was causing the irregular beats. My psych wants me to try Zoloft, but I'm honestly afraid I will have the same experience, as I'm convinced whatever the SSRI-class of drugs does to my brain has a major impact on my heart - some good (reduced tachy), some bad (ectopic beats galore!). I will ask him about Buspar at my next appointment. I remember we talked about it a while back, but at that point I was doing OK med-free. I do have a stash of Xanax for when things get really bad, but I use it very sparingly and I'd like to have something that helps me daily and not just when I'm really stressed and panicky. I was on a low dose of xanax daily for about a year when I first got sick and they thought I may have a pheochromocytoma or carcinoid tumor. I had absolutely no trouble weaning off, so I don't have any hang-ups about using benzos when necessary. Thanks, too, for the suggested natural alternatives. I will consider those. I would just like to find something that helps me weather the bad days a bit better than I do now. I am fortunate in that my 'normal' days greatly outnumber my bad - but when I hit a rough patch I tend to spiral. (What's REALLY wrong with me? The doctors must be missing something! Will this 'thing' ever go away for good? Etc.) I'm sure my psychological state (worry) exacerbates my physical symptoms. Anyway, once again I've managed a long-winded post! I wish you good luck in your own continued quest for answers. Keep us posted, OK? Wishing you good health, RG
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