justin

sometimes a ttt also includes an injection to see how your heart responds to stimulus. usually people with hypotension don't have to get that far, because they experience syncope and/or tachycardia just from the tilt. or at least that's what i've been told. ? so maybe a ttt would be useful. maybe your postural tachycardia could be related to the release of stress hormones. there could be a bunch of reasons, and hypotension isn't necessarily one of them. coffee and alcohol. i can't have either anymore; i don't care too much about the coffee, i stopped drinking that years ago, although i miss chocolate/cocoa. i can't even tolerate the caffeine from that anymore, it triples my resting heart rate with, say, a slice of cake. the alcohol thing is annoying, though. i haven't had a real drink in almost 10 months. soooo...you're lucky. i say go with it. smoke if you got 'em.

hey angie. read the post i started called 'uhhhhh' for my experience along these lines. on the one hand, i'm really sorry to hear this is happening. on the other, it's a relief when there's more and more people who have similar things happen. and yes, many doctors are morons. ahhh, it feels so good to say that. justin

yep, he's serious. welcome to the wonderful world of living-with-mysterious-orthostatic-symptoms-under-the-ontario-medicine-regime. blame the tories. it's their fault. all those nice health cuts in exchange for a tax break for those who don't need it... i'm thinking (keep saying this but haven't done it yet) of going to see the docs in montreal at the jewish general hospital. apparently they specialize in this thing...

well, you'd have to move to toronto. some of you would find winter difficult, i'm sure....and like i said, the resources suck....

yes. these happen to me every day, but not often during the day. maybe a couple of times. usually it's my arm or (like you) my head. but almost always in my upper body. very occassionally i'll get it in my legs, and then only at night when i lie down in bed. i first started noticing it happening regularly after i started taking sertraline (zoloft) although i had it somewhat before it as well...

i guess this is one of the things i should be grateful about...seeing as how i live in canada, the only thing i ever have to pay for are ambulance rides...well, i do owe some $$$ for those, but not too much...everything else is covered (including tests, procedures and surgeries), except for drugs usually. but since i'm on social assistance, my drugs are paid for now (as long as they're pharmaceuticals...heh). unfortunately my doc is a naturopath, so he's only 1/3 covered by the provincial health coverage. that's my major expense. most of what he prescribes isn't covered...ironically, all the specialists are free. the downside is that there's very few resources available here (in terms of POTS, i mean) and the waiting lists are super long to see any specialist. actually, for gp's the waiting lists are super long, too... it seems from reading the posts from those who live stateside, that you've all managed to get much better treatment...but expensive. so, yeah. sorry to hear about your staggering med bills, nina. that really *****. one can only hope they'll get off your back eventually. good luck. justin

i guess, the thing that freaks me out about this particular time (or couple of times, since it has now happened twice) is that there are other (new!) symptoms presenting themselves. this isn't the usual tachycardia that i used to experience. it's accompanied by this strange convulsions business, and a high BP. plus afterward i got headaches, neck and back pain, and nausea that lasted for a few hours. it's not the same old, same old POTS thing for me. i got used to that. i guess maybe the novelty of the new stuff hasn't worn off...heh but it is nice to know others experience it, too. for sure. i totally agree. and thanks. justin

i am so frustrated. the cardiologist said it was 'probably a bit of anxiety'. if anyone gives me that line one more time, i swear i am going to go postal on them. then he referred to my gp. my gp was more interested in what the cardiologist would say. of course! how #!*$@*$ predictable! the only thing he suggested was doubling my atenolol dosage. i just don't see the point.

no, it's more like what you would expect a seizure to be, except that i was conscious and aware. i definitely could not get up. i was lying on the floor while it was going on. every single part of my body was involved. arms, legs, everything. it was extremely violent, like, so that my legs were coming up off the floor, and i could hardly take a breath since all the muscles in my chest, neck and abdomen were constricting. i was gasping. even my facial muscles were going off. i'd say the worst of it lasted about 10 minutes, and all in all it was over within 1/2 an hour. i'm starting to feel a bit more back to normal now. it's been about 48 hours. my mom, who works for a couple of resident hospital neurologists, was very upset when i told her about it (mostly because i didn't go the the hospital) and was very adamant that i talk to my docs a.s.a.p. so, no worries. i definitely will, and will keep you posted if anything comes of it...

yeah, i called my cardiologist and my gp. both of them closed their offices early today, so i left a message for them to call me back at the beginning of next week. i guess, yes, there could have been a trigger. yesterday i did exert myself more than usual. i got ambitious and tried to put up some shelves, which meant moving some stuff around. also i was out grocery shopping for a long time while it was windy and cold. on my feet for quite a while. thanks, folks...

so last night i had this intense event. it started with me not being able to breathe very well, then my HR increased dramatically (to 166 lying down from about 78 just before) and my BP shot up (it was 144/98 then, it was at 153/88). then i started convulsing. my entire body, limbs, head, everything was shaking. i was conscious, though. my roomate found me like this, on the floor in the doorway to my bedroom (he was the one who checked my BP and HR). this subsided after about 1/2 an hour. today i feel like a truck hit me, and i have a throbbing, dull headache and neck pain. probably my muscles are really sore...heh... this freaks me right out, especially considering since i've been on the beta-blocker, my resting HR is usually 60-80 and my resting BP is around 110-120/60-65. so, uh, convulsions, seizures? anyone? anyone? justin

i have woken up out of a deep sleep with these kind of attacks, so i subscribe to the notion that it's not simply panic or anxiety (for me, anyway). i think this is the worst and most frightening symptom of POTS.

i used to get down to about 40 sometimes in the early morning. it sucked. the internist i was seeing at the time who noted it told me that below 50 is considered bradycardia. so i think 50 is ok. bradycardia is a common side effect of taking the meds...

cassava, sweet potato, yam, turnip, squash, potato. there are others, but these are the ones you're most likely to find at the supermarket. if you have an open air market near you like i do, you may get some cousins to cassava and yam too. these are all starchy veggies, have them with some margarine or sauce of some kind, or if you want some recipes for the above, check out vegweb.com justin

two of my roomates have moderate to severe gluten sensitivity. i do as well, but to a lesser extent. if i have a gluten heavy meal such as veggie dogs/burgers or say, chinese vegetarian food (all of which contain large to insane amounts of gluten) i can have a bad reaction. but just eating food with normal amounts of gluten in it, like a couple of slices of bread or maybe some whole grain cereal...i can handle. i may have mentioned this before, but acidophilus is good for helping folks with a mild sensitivity to certain foods deal better...unless of course your gluten sensitivity is actually celiac disease, in which case it would be useless. you can also take enzymes, which are even better. some people lack or are deficient in certain enzymes which are used to break down specific types of food. this can be tied to food allergies. you can also get enzymes in food itself as long as it is raw or only slightly cooked. my doctor is a naturopathic MD, both my mother and i have been going to him for 10 years...my mom got a lot out of the enzymes that he prescribed for her...you might want to give it a shot. i've found a good way to avoid gluten, yet still eat enough carbs without subsisting entirely on rice pasta, is to have more starchy root-vegetables. nancy, this could also help with keeping the weight up. i've been struggling with that myself for my whole life, but especially for the past 2 years. i'm a 6' 5" guy who's always been about 175 pounds or so. when i got really ill this past winter, i went down to the high 140's, at that point i was about 60 pounds underweight. i've managed to gain back to 165 or so, and stayed there a couple of months. about mid summer i started losing it again, and i'm hovering at about 160 i think. green vegetables are useless for gaining weight. protein should work, but sometimes it doesn't. i was on an amino-acid protein supplement, and i tried eating nut butters, too, which was both high protein and high fat. did nothing for me. carbs are the key, cause your body can also convert them to fat, and frequently does if you are eating more carbs than are needed for the basic energy requirements of your cells. so, yeah, starchy carbs. root veggies. bring on the squash, potato and whatnot. that's what i would suggest. sorry for rambling.... justin

i don't ever swim, unless it's in a lake or river. i hate public pools. maybe it's the chlorine i can't stand. i actually haven't been swimming at all in over 2 years. so, no, i haven't tried it for the POTS, although i thought about it recently. i think i'd need to find a partner to go with, though, since i'm kind of paranoid about doing it alone...

i find the so-called 'yaz exercises' fairly easy to do. well, some more than others. i like the leg ones the best. users.erols.com/dgled/getbetter.htm

until recently, my bp was fairly low anywhere between 90 and 110 systolic and 55 to 70 diastolic. over the last month or so, though, there have been some weird fluctuations. my pulse pressure has widened A LOT, 30 is where it used to be and now it's around 60 or sometimes more. this seems to happen when i am lying down. if i'm sitting it's more normal. the only thing that has changed with me is that i've now been taking atenolol for about 2 months. the strange thing is, that when this happens my bp will be like 135/65 (for example) when lying down. so, is this isolated systolic hypertension, supine hypertension or...what? i'm going to ask my doctor about it, but i just wanted to know has anyone else experienced this (or am i the only freak who measures his bp at home....heh ) justin

your first question. i still get sick, too; actually, i think i get sick more when it comes to things like allergies and viruses (although i get less sick with some other things that i used to get lots--e.g. i had chronic bronchitis for several years, and since i've developed POTS symptoms, i haven't had a single really bad episode-huh!) ssri's. i agree with nina. i took sertraline and it sucked, but when i switched to a low dose of celexa, it helped with my depression, my POTS symptoms, AND i also had zero side effects after a few weeks. actually, i'd say the celexa works better for me than the beta blocker i'm on, if i had to choose between the celexa and the atenolol i'd take the celexa hands down, even though the atenolol has a much greater effect on my heart rate and palps than the celexa. it's just made me feel much more fatigued and generally crappy. pros and cons, pros and cons.... justin

huh. i thought i was the only one. my temperature has always been a degree or so below normal, since i was a kid. a 'low grade fever' for me would occur when my temp got up to normal. 98.6 invariably meant i was coming down with something. recently, though, my temp has gotten way lower than usual. every time someone takes my temperature, it's around 96 or less. a couple of times recently, i took it (like you, when i was feeling 'feverish') and it was 94.1 very strange.

elaine: i'm vegan, and i have been for a number of years. actually, i've been vegetarian for most of my life, as well. my diet used to be very well balanced, but over the past 1-2 years has become grab-whatever-i-feel-like. very inconsistent in terms of intake and the kind of food it is (i.e. carbs, proteins or fats). recently i have more carbs, some fats and very little protein. this is mainly because i have a hard time eating a lot of protein, particularly if i'm feeling nauseous. ditto on the fat. so i stick to carbs, mostly. i know it's not doing me any favours, really, but sometimes all i can manage thinking about is a piece of toast. I DO feel weird after having a nap (!), particularly if i've just eaten a snack beforehand, and even more so if it's in the early to mid-afternoon. the only thing i could describe it as is an overwhelming heaviness. my breathing gets really laboured and it feels like my body is lead. also, i would wake up sweating and feeling flushed (and i normally can never sweat). it usually goes away after a couple of hours. i don't know if it's necessarily blood sugar related, though, because i've tested myself before when i felt like this, and it was in the normal range. the lowest my blood sugar has ever gotten is 48 and the highest was 216 michelle: thanks for the link!

wondering if anyone has insulinemia or diabetes, or any other form of impaired glucose or insulin tolerance? my gp diagnosed me a year ago with what he termed 'mild hypoglycemia'. whatever, that's all fine and manageable, but i've also had a couple of tests that showed an abnormal fasting insulin level, and just recently have had a few unacceptably HIGH blood sugar levels (the opposite of my usual problem). is there a connection here with POTS? i saw a link on the potsplace site between POTS and 'reactive hypoglycemia'? but was wondering if anybody knew anything more.

i can relate to that fear. very much so. particularly before i had any inkling of what was going on, i would get it daily. there was even a short time when it was constant (like every waking minute). i had this terror hanging over me. i felt like any minute something really, really bad was going to happen, namely, that my heart would stop or something like that. there were times that i was convinced that i wouldn't live through the night. it was absolutely the most terrifying thing i have ever experienced, and was not alleviated by friends or family holding my hand and telling me it was going to be ok. pure panic. total adrenaline. like being on really bad drugs, and not being able to come down, only a thousand times worse. i have been there. and i'm not there anymore. i still get this feeling, but it's not constant, and it's not even every day, and i can deal better when it comes. i hope it passes for you very soon....

i've gone to the er maybe 2 dozen times for POTS-related symtpoms within the past 14 months...not including the times when paramedics came to my house but didn't take me to the hospital because my HR came down while they were there. somtimes i went on my own, sometimes i was driven by my mother, and sometimes i arrived by ambulance. i was sent away probably 20 of those times without treatment after the usual lab work and ecg... out of the remainder of my little visits, i was given psych meds, anti-anxiety drugs, pills to aid in digestion....and that's about it. to heather c. : your er story...that's terrible! and this was after you were diagnosed!? what ignorant jerks...once i fell off a moving train (long story, don't ask), hit my head, and started experiencing POTS symptoms. the paramedics took me to the hospital with tachycardia, high BP, and syncope. they had me on oxygen and i arrived hooked up to a heart monitor, on a stretcher. they were concerned, in fact they made me go to the er...i didn't really want to go. i couldn't remember what day of the week it was. the nurse who triaged me evidently didn't think i was too bad off, because i then had to wait 3 hours while people who WALKED IN by themselves with minor abrasions were seen ahead of me. the doctor who eventually saw me told me i had a concussion and discharged me. but since i was so far away from my house, my roomate had to borrow someone's car to come pick me up....i didn't get home until late that night, and this happened at like 10 in the morning. what a waste of time...

hey i had to drop out. i was trying to finally finish my undergrad last year, actually, i was trying to finish it the year before that too...heh...but i got too ill to go to class at the beginning of second semester. it was pretty disastrous, and now i owe my registrar beaucoup $$ because my student loans got rescinded when i dropped my courses and i had to go on welfare to support myself since i couldn't work obviously. now i'm mad that i couldn't have gotten ill, say, a few months later so at least i could have finished. i'm a few credits short (3, i think?) so i could finish with another year of full-time school but i just don't have it in me right now. on top of that, i think i'm screwed because of my loans getting audited and the fact that i still owe... so i'm trying very hard to keep school out of my mind... hope it works out better for you. oh, and.. hi. justin