RunnerGirl

Opus, I'd also be interested to hear the specifics of what you did nutritionally to help your symptoms. I have a relatively normal existance compared to most here - for which I am quite grateful - but have been battling a recent flare-up in anxiety and mild tachy. (I've never been "officially diagnosed," but I've been told by an EP that I have either a mild form of POTS, IST, or some other hyperadrenergic disturbance of the ANS.) Anyway, I restarted a very low dose of Lexapro a few weeks ago, which immediately reduced my tachy and seemed to help somewhat with the anxiety, but gave me the worst run of ectopic beats I've had in over a year. I've come to the conclusion that Lexapro irritates my heart (cause a major increase in irregular beats) after experimenting with being on and off it over the last two years. It's frustrating because I believe this problem probably extends to all SSRIs. I really would like to take something to help with my anxiety and rumination about my health. The Lexapro did help with this, but I cannot tolerate non-stop PACs and PVCs day in and day out. They are at their worst about 4-5 hours after I take my dose of Lexapro and immediately abated when I dropped the dose in half (from 5 mg to 2.5mg). Anyway, this was a very long-winded way of saying I would LOVE to try something other than a script! Please enlighten me on your experience! Thanks! RG

Ah, yes, those lovely orange pee jugs! I remember them well! (Note to others using the fridge: This is NOT orange juice! :-)) As regards you PFM test, it does seem very odd that they indicated an inteferring substance when you didn't take any acetominaphen-containing products. I've met some of the top NIH pheo researchers and that's one of the several reasons they consider the plasma free metanepherine test the 'gold standard' for ruling in/out pheo - so few substances can interfere. Your lab probably already gave yout these instructions for the 24-hour urine test, but just in case, you may want to check out: http://my.webmd.com/hw/heart_disease/hw6078.asp#hw6141 If you are able to get more info from your lab on the PFM test, I'd be VERY curious to know what they say about the inteferring substance. In the meantime, I'll check with some of my pals on the pheo boards to see if they know of any other substances that can interfere. Take care, RunnerGirl

Hi, Amy. The beta blocker shouldn't be a problem. In fact, as far as I know, the only inteferring substance for the PFM assay is actually Tylenol - or any substance containing acetaminophen, the active ingredient in Tylenol. Any chance you popped a Tylenol for a headache or took cough medicine before you test??? Other substances (caffeine, alcohol, etc.) do not interfere, but rather can cause falsely elevated readings. The following is from Quest Labs: Code: 37745 METANEPHRINES, FRACT., FREE, PLASMA Performing Lab: Clinical Significance: Reference Ranges: Preferred Specimen: 5 ML OF FROZEN EDTA PLASMA (LAVENDER-TOP) PATIENT PREPARATION: DISCONTINUE EPINEPHRINE AND EPINEPHRINE-LIKE DRUGS AT LEAST 1 WEEK BEFORE OBTAINING THE SPECIMEN. THE PATIENT MUST REFRAIN FROM USING ACETAMINOPHEN FOR 48 HOURS BEFORE THE SPECIMEN IS DRAWN. THE PATIENT MUST REFRAIN FROM USING CAFFEINE, MEDICATIONS, AND TOBACCO AND FROM DRINKING COFFEE, TEA, OR ALCOHOLIC BEVERAGES FOR AT LEAST 4 HOURS BEFORE THE SPECIMEN IS DRAWN. Alternate Specimens: Minimum Volume: Specimen Container: PLASTIC SCREW-CAP VIAL Transport Temperature: FROZEN Specimen Stability: REFRIGERATED: 30 DAYS FROZEN: 30 DAYS Reject Hemolysis: Reject Lipemia: Reject Thaw/Other: Methodology: LIQUID CHROMATOGRAPHY-TANDEM MASS SPECTROMETRY (LC-MS/MS) Setup Days: Setup Times: Turnaround: CPT Code(s): 83835 Please let me know if you have any other questions! Best to you, RunnerGirl

Great lists, one and all! Special props to Katherine on the Dr. Strangelove choice! I would add some of the classic Peter Seller's Pink Panther movies for anyone that needs a good laugh. Also, Airplane (my fiancee is an airline pilot and can recite all the cheesy one-liners!) and The Wedding Singer (great 80s flashback). If you like thrillers (and aren't already too adrenalized!), one of my favorites is Jagged Edge. Happy viewing, RunnerGirl

Porque: I had a similar reaction when I was started on a dose of 20 mg of Prozac. I was on it just four days when I developed the worst anxiety I've ever experienced - it was like one continuous panic attack. The panic was accompanied by a splitting headache, the likes of which I hadn't experienced since one of my rare binge drinking nights as an undergrad in college! It was horrendous and I was terrified to try an SSRI again for some time. Some people simply cannot tolerate SSRIs - but for many of us, it is just a matter of starting on a very low dose and SLOWLY building up. I honestly don't know why more docs don't advise their patients of this. For those of us with ANS issues (who seem to be ultra-sensative to meds), starting on a TINY dose and workng up is even more important. Most pills can be safely split - just check with your doc before you start tinkering. In my case, I did fine on Prozac (yes, believe it or not, I eventually got the courage to try it again!), but only after starting with 2.5 mg, going up to 5 mg, and finally up to 10 mg. Never did get back up to that 20 mg dose! Good luck to you if you try again! RG

Hi, Violahen. Sorry you're having so much trouble withdrawing from Lexapro. Were you on a particularly high dose? That can certainly complicate the taper. I, myself, was on a low dose of Lexapro (5 mg) last year and successfully weaned down with little impact. That said, I do recall feeling a little dizzy and spacey for a couple of days, but I just went to 2.5 mg for a week, then 2.5 mg every other day, then off. As with starting meds (I always take crumbs for a week or two before bumping up!), I think if you take an ultra conservative taper schedule (even more conservative that what your doc advises), you can mitigate some of the worst of the symptoms. Then again, as well all know, everyone is different. I hope things smooth out for you soon! Best, RG ps. I actually just restarted the Lexapro last week due to increased anxiety. I plan to get up to 5 mg again (I'm still only at 2.5 mg - like I said, a crumb!) and see how I feel on that. Fortunately, the only real side effects I experienced last time were night sweats (mentioned in my earlier post) and vivid dreams (which were actually kind of entertaining!)

Last year, I had recurring night sweats while on a low dose of Lexapro (5 mg), as well. That was my only real side effect, along with vivid dreams. My GP said she was doubtful I could experience night sweats on such a low dose, so she ran a series of tests to rule out a variety of infectious diseases. All normal. The real proof that it was, indeed, the SSRI came when I weaned myself off Lexapro and the night sweats disappeared. Incidentally, I restarted Lexapro a couple of weeks ago (I've had a flare up in physical symptoms related to anxiety recently, which generates more anxiety, etc. You know the drill! I want to stop the cycle before it gets out of control!) So far, so good - but even if the sweats come back, I'll consider that a fairly tolerable side effect, particularly now since I know they are due to meds and not some disease my docs are missing! Good luck! RG

Katherine: <<There is a controversial (to say the least) diagnosis called Wilson's syndrome. It's basically "hypothyroidism without the lab values to support the diagnosis". It has resulted in inappropriate prescriptions of synthroid and morbidity and mortality associated with that.>> Thanks for posting this. I actually came across a reference to Wilson's Syndrome when I was researching my own thyroid problems a while back. I know how I felt when I was slightly overmedicated for my hypothyroidism, and I would NEVER want to be prescribed Synthroid (or any other exogenous T4 or T3 meds, for that matter!) if I weren't certain of my diagnosis and my body's need for supplementation. While I can sympathize with patients who are desperate for a diagnosis, a CAUSE for their troubling symtpoms, the risks of taking exogenous thyroid supplements when they are not needed are certainly not inconsequential, as you point out. Bone loss, cardiovascular complications, etc. I actually stopped frequenting one particular thyroid disease board because I felt like the tone of the board was too much of the "if you're tired and overweight, it MUST be hypothyroidism, and your doctor is evil if he/she won't give you thyroid meds!" variety. (Needless to say, my pointing out that I'm nearly 5'5" and weighed 111 pounds at the time of my diagnosis with hypothyroidism didn't exactly go over well there! :-) ) As a bit of an aside: I lurk more than I post, but I always enjoy your thoughtful responses and insights, and I'm often struck by the similarity of your POTS experience and symptoms to mine. That we both have Hashimoto's is also of interest. I'm glad you've progressed so much since the onset of your symptoms and I hope you continue to have happy, healthy days ahead! Regards, RunnerGirl

<<there is so much doubt among thyroid patients about their endocrinologists- they have all sorts of trouble - so maybe medicine is getting wrong.>> I definitely think at least some of the doubt stems from doctors' looking only at lab values and making treatment decisions on these alone, without also considering how the patient feels. I'm speaking in particular of those who have been diagnosed with thyroid illness. My TSH levels - since beginning treatment - have always been quite erratic. Intially, my GP would adjust meds based on my TSH reading. When I went from a normal 3.0 to a 13.7 in a few short weeks, and was suffering from HYPER symptoms, not hypo as you'd expect with such a high TSH reading, she increased my meds. Well, I became MUCH worse - lots of tachy, anxiety, insomnia, etc. My free T4 levels were at the high end of normal, even with my elevated TSH. We now look at what the free hormone levels are before making any decision about medication adjustment. I ran a marathon earlier this year after a my TSH around 11 - so obviously I wasn't suffering from any particular hypo symptoms at the time! In time, my TSH, with absolutely no med adjustments, came back down to 1.4. I am so glad we didn't up the meds to address my elevated TSH! The issue of subclinical hypothyroidism is still controversial in my opinion. I think too many patients probably hear that a sluggish thyroid can make one fatigued and prone to weight gain. But when nothing clinically supports the diagnosis of hypothyroidism, I don't believe thryoid supplements should be given. Fatigue and weight gain are too often the product of the way we live, and not directly attributable to a medical condition. What is more, by treating thyroid based on no clinical evidence, it could distract the doctor and the patient from seeking out the REAL cause of fatigue, weight gain, or other symtpoms when, in fact, they are attributable to another true medical condition (ie, CFS, POTS, depression, GAD, you name it!) So, from my little soap box speech, you see I'm a fan of treating on symptoms AND labs! Doctors who look at one and not the other can certainly frustrate me! RunnerGirl (forever on the TSH rollercoaster!)

Blackwolf: Very good point. I know I feel 'hyper' when I'm in the high range of normal (for free hormones) and the low range of normal (for TSH). Other women report feeling dibilitating fatigue with numbers that make me feel just fine. Thyroid hormones are incredibly powerful and a small change in dose can mean a big change in labs and symptoms. I found this out the hard way, swinging from hypo to hyper many times. This is especially true in autoimmune thyroid disease, where our gland functioning can wax and wane over time. My GP used to try to chase down my TSH, but now we just go by how I feel and where my free hormone levels are. If they are in the normal range, even with an elevated TSH, we usually just keep my med levels unchanged, unless I'm feeling poorly. I have often wondered if my POTSy symptoms (chiefly an erratic heart rate and BP) have more to do with my quirky thryoid and the meds I take than any real malfunction of my autonomic nervous system. Best wishes to all dealing with thyroid issues on top of ANS symptoms! RG

Radha: It's very important when testing thyroid function to look at not only TSH (which is actually produced by the pituitary gland and signals the thyroid to either increase production or decrease production of thyroid hormone) but the actual level of thyroid hormones in the blood. Did they test your free T4 and free T3 levels, which are the actual values of thyroid hormone in the blood? A complete thyroid panel is essential to rule out thyroid-related illness. I would also recommend testing for thyroid antibodies. I know several people who tested normal for thyroid function but had elevated antibodies. They eventually went on to develop autoimmune thyroid disease. Good luck and keep us posted. I have been on a thyroid rollercoaster (I have Hashimoto's hypothyroidism) for many years, so I know a little bit about testing and whatnot. RG

Passing comps and completing a Ph.D. program is an amazing accomplishment for even those in superior health. That you have embarked on this journey with the various health challenges you face shows amazing courage and tenacity. I have no doubt that you will complete and successfully defense your dissertation, and we will be addressing you as Dr. Mighty Mouse in the near future! Best wishes to you - and bon voyage! RunnerGirl

Paige: I am so very sorry you had to experience such a frightening event, only to be brushed off by the ER staff. I agree with others who have said to SEE a DOCTOR ASAP. Some doctor, any doctor. You deserve answers. Frankly, I'm stunned that any medical professional would attribute such symptoms to "anxiety" - particularly with a BP reading as low as you had. Don't purely anxious patients typically have abnormally HIGH BP readings?! I also wanted to emphasize what Gail said about the connection between Wellburtrin and seizures. Of course, we're just making assumptions here about what actually happened to you, but if it was a seizure, REGARDLESS OF THE CAUSE, a prudent doc may want to wean you off Wellbutrin ASAP. I wish you the very best in getting a QUICK resolution to this latest health concern. Please keep us posted, OK. With care and concern, RunnerGirl

Hi, Mary. The processing times for the urine test varies by lab, but it shouldn't be longer than one business week, I would think. The plasma free metanpherine test is a good idea, particularly if your urine test comes back negative. False negatives are relatively common, as some pheos secrete catechomolines only episodically, and one can have 'normal' readings when the tumor is not active. One question to ask yourself is whether you were symptomatic during your urine test, and/or did you have an 'episode' while collecting for the test. If you WERE experiencing symptoms or you DID have an "episode", and the test is NEGATIVE, you should feel a bit more confident that whatever is causing those symptoms is NOT pheo. Nevertheless, I would still recommend the plasma test, as the incidents of false negatives are extremely low (less than 1%, according to some NIH studies). Likewise, if your urine test comes back positive, you might also want to get the blood test. False positives are ALSO common with the urine. Certain meds can elevate catecholomines, as can certain foods, caffeine, and alcohol. I'm sure the lab told you to abstain from any offending substances during your test, but this is just something to keep in mind if you get a slightly elevated reading. My understanding is that an extremely elevated reading (ie, double the high end of the reference range or more) is normally indicative of pheo. Keep us posted, OK? I can provide you with more guidance and information on the PFM test if/when needed. Best, RunnerGirl

Oh, my, yes! I've had loads and loads of bloodwork - mono, Lyme, HIV, etc., etc. - and nothing is ever found. Even though my thyroid tests also usually come back 'normal' when I've had these alternating sweats/chills, I'm more and more convinced it has something to do with either fluctuations in thyroid hormones (I have Hashimoto's Disease - autoimmune hypothyroidism) or yet another lovely side effect of having a hyper-responsive autonomic nervous system. If my heart rate and blood pressure sometimes behave poorly, I figure my temperature regulation mechanisms can also malfunction. One thing is for sure: I'll have no idea when I actually enter menopause, since I will have become so accustomed to hot flashes, night sweats, and the like! Good luck in managing this! RunnerGirl

<<The topamax has helped, but it sure doesn't help in the "stupid brain" factor. >> My friend, who suffers severe migraines, was also prescribed Topamax. She began calling it "Dope-a-Max" because of how it impacted her short-term memory, word recall, etc. I guess that's a pretty common side effect! I hope you find something that provides you some relief soon. I think your medication options will expand considerably once the doctors have definitely ruled out pheo. Best to you, RunnerGirl ps. If you haven't already, you might want to check out: http://pub1.ezboard.com/fpheochromocytomas...metopheosupport

Amy: So sorry you're going through this rough patch. The feeling you describe is, in my opinion, one of the worst side effects of having an out-of-kilter ANS. I'm not sure of your med history, but I agree with MomtoGiuliana about potentially trying a LOW DOSE SSRI like Prozac or Lexapro. (I emphasize low dose because so many of us with autonomic dysfuction seem to be very sensitive to meds and the SSRIs can actually make panic/anxiety worse at first. My doc likes to tease me about taking "crumbs" of medication - but I started on 2.5 mg of Lexapro and worked my way up to 5 mg and that was fine for me. I never got near 10 mg, which is the standard minimal therapeutic dose for most people.) For what it's worth, I was given a script for Xanax (also a benzo, like your Clonipin) when my symptoms were at their worst and it barely took the edge off. I think an SSRI (which can actually help rewire our ANS, according to some POTS / dysautonomia specialists, in addition to helping with the anxiety/panic/depression symptoms) may take a bit longer to work, but may be worth it in terms of longer-term relief. Assume you're also on a beta blocker of some sort? If not, a low dose of that could also potentially take the edge off some of your anxiety. Good luck to you. I know it's small consolation when you're in the middle of an episode, but the feelings WILL eventually go away. Hang in there! RunnerGirl

Merrill, Thank you so much for posting this helpful information. I never had any trouble with novacaine - until about two years ago. I was sitting in my dentist's chair and she had just administered a little more novacaine around a tooth that needed a replacement filling. I suddenly felt very panicky, though I didn't let her in on it. (No one likes the dentist - let's face it - but I don't have any particularly fierce dental anxiety.) The feeling eventually passed, but it was extremely unpleasant. Just about a month later, I began having that same feeling for no apparent reason - and then I realized my heart was racing and behaving very erratically - slowing down, speeding up, throwing off ectopic beats, etc. My blood pressure would also tend to rise during this time, which is why (after a long fight to rule out panic attacks) I was worked up for pheochromocytoma. All tests for pheo were negative, which is why I ultimately found myself with the diagnosis of some sort of hyperadrenergic form of autonomic dysfunction - something short of full-blown POTS, but clearly a misfiring or hyper-reactivity of the ANS. I now look at the incident in the dentist's office as sort of a harbinger of what was to come. At that time, I felt perfectly normal, but even then my ANS must have been growing more sensitive or iritiated, since I had never had any trouble with epinepherine containing products before. I have also found myself extremely suspectible to things like caffeine and pseudoephedrine-containing cold and flu remedies, whereas these products never bothered me before. I avoid both now because they give me that same panicky feeling I had with the novacaine. Does anyone with ANS dysfunction / POTS have similar reactions to these products - even when they are in an upswing and feeling relatively asymptommatic? I find even just a small dose of these things will flare up my tachycardia and give me a very uncomfortable nervous feeling. RunnerGirl (hoping to RUN away from the flu this season!)

Mary: Good for you for staying on top of this! I'm so glad to hear your doctors responded positively to your request for the urine test. It will more than likely turn out to be negative, but given your family history of parathyroid issues, I think it's definitely worth investigating. Holding off on meds is a good idea until pheo is ruled out. Please do keep us posted! Best, RunnerGirl

Hi, Mary. Indeed, I have experience with pheo testing, as do several others on the forrum that have hypertensive POTS or a hyperadrenergic form of dysautonomia. Many of the symptoms of pheo overlap with non-tumor related autonomic dysfunction. It is good to rule pheo out definitively through urine and/or plasma tests. The following is taken from a post I made a couple months ago in response to another question regarding pheo testing: "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." RunnerGirl Posted: Jul 23 2004, 03:30 PM Another document to check out re: pheo testing and the plasma free metanepherine test is here: http://www.ibl-hamburg.com/catecholamine/l...enders-2002.pdf Good luck and sorry for the long (repeat) post! RunnerGirl

<<I have noticed I get a sudden sensation of breathlessness and an urge to cough when I get them ... although at other times, I seem to not notice them as much -- anyone have these sensations?>> Amy: Oh, my, yes! I could have written that precise description, as well! For what it's worth, I went through a period of about six months where I'd get ectopic beats nearly every single day - sometimes for hours on end, and with a frequency of many premature beats per minute. It was maddening and terribly frightening - at least until I'd been reassured by two cardiologists, an electrophysiologist, and at least two different ER docs that the things were 'benign'! Like you, I was never able to isolate any triggers. But just as they came on in full force, they eventually abated for several months. (I'm going through another bad spell lately, but I think I can blame this one on stress!) Like other POTS symptoms, they seem to wax and wane with me, with no apparent pattern. On the topic of whether exercise helps or aggravates, I have to say my own data is inconclusive! As many of you know, I'm a bit time exerciser (marathon runner). When I'm going through a 'flare up', I don't notice the irregularities WHILE exercising, but often they are quite bad once I finish working out and have 'cooled down.' When I'm in a good phase, the exercise doesn't seem to aggravate the ectopics, though. I agree these are one of the worst symptoms (mentally) to cope with! RunnerGirl

Sue, Congratulations to your cousin, Eric, on such a wonderful milestone. I think it's terrific that you'd like to give him a gift to commerate the occassion, too! If you can't think of anything he really needs, perhaps making a donation to the local American Cancer Society chapter (or another organization like the Leukemia & Lymphoma Society, depending on the type of cancer he survived) in his honor would be a fitting tribute? I am very active with the Leukemia & Lymphoma Society and I know first hand how much donations (even small ones!) positively impact the lives of cancer patients and their families. Good luck and enjoy the party! Best, RunnerGirl

Ernie: I just wanted to add my words of support and second what everyone else here has said. Ever since we exchanged e-mails a few weeks ago, I've been hoping and praying you'd get some answers. Perhaps this doctor and the tests he's going to perform will be the answer to those prayers! Good luck, stay strong, and hold on to the hope that things will be better for you! Keep us posted, OK!? RunnerGirl

Definitely check with your doc on a taper schedule. In addition to dose, the particular half-life of the medication is also a consideration. For example, Prozac can be terminated more quickly due to its longer half-life than some of the other SSRIs. Good luck to you. RunnerGirl

Jessica: I just wanted to wish you well in your upcoming endeavors! I don't blame you for wanting to 'go for the gusto" now that you're much improved from where you were when first diagnosed. As for the worry, I think all of us that have experienced significant waxing and waning of symptoms (as I suspect most do, as this seems to be a hallmark of many forms of autonomic dysfunction) always fear we'll relapse just as we take a bold step to reclaim our lives. My vote is this: don't let this fear hold you back! Make the very most of the good days! Best to you! Keep us posted, OK?! RunnerGirl