justin

i think i've had my adrenals looked at maybe twice with previous blood work. once for sure, and that was when i was at my worst. nothing. nada. so that would seem to suggest i don't have any tumour. however, it's weird because my POTS 'crises' (when they occur, usually at night or when asleep) mimic those symptoms exactly. the hypertension, especially, fits the picture. it's both drastic and extremely short lived. the last time it happened i was 160/67 then went back down to 115/70 or so within about 2 minutes. i've told my cardiologist of these events. he is unconcerned. i've told ER doctors. they are unconcerned as well. .....yeah. right. like, a pulse pressure of 100 is completely normal. .....sure. whatever. at times i have not even been able to read my BP on the monitor, i would pump it to well over 200, but the systolic wouldn't even register and it would give an error. this is super frightening but i've learned that it's no use to call anyone or go to the hospital or anything, because within 5 minutes the symptoms have vanished and i'm suddenly looked at as a headcase. but i don't imagine this stuff, i swear.

i do 'yaz' exercises. they help and are recommended for folx with orthostatic symptoms and deconditioning. justin

wow. i'm sorry to hear that, too. good thing they detected it, though, cause most cerebral anyeurism ruptures actually occur in ppl. who's anyeurisms hadn't been diagnosed (i think). in answer to the POTS/anyeurism connection, i'm not entirely sure. however, i had an x-ray of my head when i was a baby (i had a dose related allergic reaction to penicillin that made my head swell to twice it's size) or something (i don't know if it was an x-ray or a CT or what) and my mom tells me that no anyeurism was detected. and i had a chest/abodomen CT last year, and it didn't see any aortic anyeurisms either. so apparently i don't have them. keep us posted. justin

emily when i first starting getting symptoms of IBS (11 years ago now) i had just had my appendix removed. my mom drove me to the hospital several times in the following months because of the pain, which felt just as severe as the pain i experienced during the appendicitis. like, rolling around on the ground agony.... anyway, after a few times, they told me it was 'spastic colon' which was the sexy term they used back then to describe what has since become known as irritable bowel syndrome. anyway, fortunately for me, cramps only stuck around for the first few months of my entry into the wonderful world of IBS. kind of like an orientation, meet and greet, get to know the worst part of it right off the bat, heh. most of my experience since then has been with IBS' other symptoms (rarely do i get cramps anymore) but i guess i'm trying to say that severe pain in the abdomen CAN happen with IBS. justin

extremely interesting, as i have IBS (have had it for 10+ years) and about two weeks ago had an abnormal bleeding episode. i do have rectal bleeding sometimes but it's almost always on the paper only and it happens WITH bowel movements. this time it happened without a BM, and was heavy enough that it stained my underwear and turned the toilet bowl water red. (i apologize if this is TMI for some ) anyway, the bleeing stopped shortly after, but since then i've been having much worse bloating, gas, constipation and nausea than is usual for my IBS. and also very abnormal BM's. on the other hand, from reading the article (i don't know anything about colon ischaemia apart from what i've just read there) it seems that this generally affects people over 55 and not 'young, "healthy" male(s)' as doctors always seem to refer to me.

aha! as you may know, i went to BC (west coast canada) for a couple of weeks this past august. at the time, i was freaked out about flying and posted some of my worries here...anyway, all is good (i made it ) although not without symptoms on board... but i digress. i have to say my two weeks there were the best i'd had in months..apart from 1 fairly significant anxiety attack, i was at my least symptomatic (which for me, consists of being tachy and fatigued...but only those things --apart from my IBS and depression of course...heh..so, my only POTS symptoms i mean). since i got back in mid/late august i not only am back to 'normal' (which is bad) but actually have been the WORST i've been in months. i had put everything down to my sleep cycle getting messed up from a combo of jet lag and not having slept the night before i left....but now i wonder. maybe there are some aggravating environmental factors here at home... besides the fact that the air quality is worse in toronto than the west coast...maybe something around the house. it's possible. i'll have to look into it. incidentally, on the flight back, the woman sitting behind me had a major panic attack, and the flight crew threatened to land the plane cause they thought she was having a heart attack. they were in her face and totally making it worse (she kept asking them to leave her alone), so i intervened, sat with her and acted as a buffer. they all backed off when i told them i suffered from them too and knew how to deal. managed to help talk her through it too...ended up totally taking my mind of myself, and made me feel actually kind of useful. it was a cool coincidence. justin

actually, i was just about to post this exact same question. and you beat me to it. nuts my query was going to be specific to potassium. cause i have now had 3 blood tests that have showed low potassium. the first was two summers ago, the second was last year, and the third was 3 weeks ago. but i have had blood tests in between those that have shown up normal (those being at times that i was making a conscious effort to get enough potassium). so it seems like i'm predisposed to this unless i watch it carefully. the correlation i have noted is an increase in 'panic attack' type symptoms. (i.e. impending feeling of dread, difficulty breathing, chest constriction). although it doesn't seem to increase my palps or tachycardia per. se. i was also given potassium saline in my IV when i was in hospital last year instead of the regular saline. had a bolus. 8 litres in 8 hours. was pretty dehydrated. interestingly, non-selective beta-blockers (but also just beta-blockers in general) bump up the level of your serum potassium, by decreasing it's uptake from your bloodstream into your cells. so if your serum potassium already looks low on a blood test (and you're on a high dose of beta-blockers) yikes, i wonder how little your body's cells actually have? i'm on a beta-blocker, and was during my last blood test... electrolytes vary in how easy it is for us to become low in them. phosphorous is in almost everything. it's nearly impossible to become deficient. sodium is pretty hard too. a little less so calcium and magnesium. potassium is the easiest to become deficient in, and it has a huge impact on your autonomic functions, particularly the heart. anyway, i'm babbling on...sorry. oh, what i wanted to say was, your low electroylytes could have been linked to dehydration? that's what happened with me, anyway.... the upshot for me is, i'm determined to eat some bananas and grapes a little more often than usual. note: for ppl. on beta-blockers, always talk to your doctor(s) before starting any potassium supplements. you could potentially get hyperkalemia (the opposite of low potassium and just as bad). justin

about why it's suddenly getting worse for you.... i wish i knew the answer to this question (generally). cause the other night i had several PVC's in a row within a half a minute. which i'm sure is nothing compared to what some of y'all go through, but seeing as how i hadn't had hardly any PVC's in so many months, it came as something of a rude shock. i couldn't trace it to anything that i'd been doing (or not doing) or any meaningful circumstancial thing. so of course i began to worry about it, since i couldn't figure out an explanation.... it's hard to accept that it's just something that happens. sometimes symptoms are worse and sometimes better. and likely this is what i'll have to look forward to in the future. it's frustrating to get better (kinda) and then have it taken away. does that mean that i never got better in the first place? grrrrr....

i've done some yoga, mostly at home. it was mainly before i got ill, but i have done a few positions since. found that some of the positions are next to impossible. also, and this is IMPORTANT, some yoga positions are contraindicated for people with various medical conditions (including heart conditions). personally, i would recommend you stay away from positions such as the headstand (i.e. any positions that invert the body) or the crow. safer ones are the sun salutation, the triangle and maybe the shoulderstand. the fish may help with breathing, but it can make you feel really strange afterward. my advice: get a detailed book on yoga, one which details the positions that should not be tried if you have a problem such as a heart condition, etc. hope this helps. -justin

which ssri is your son on? i've tried to quit my anti-depressant no less than six times, each time with disastrous results. i think the longest i've made it is a week, and the withdrawal symptoms/side effects are just too much. you must always taper off, never go cold turkey. your doc should say the same thing. if on a normal dose, try cutting in half for a week or two, then in half again, and then if possible--again. by that time your dose will be so low that it would be virtually the same as taking nothing, so you can simply stop. so, for example, celexa: say you're on 40 mg drop to: 20 mg 14 days 10 mg 14 days (5 mg 14 days my doctor would say don't even bother with this amount, but if you can't go from 10 to zero try it anyway) 0 mg.

twice in recent weeks, the same thing for me. really bad. both times normal. i've been coughing up phelgm too. this kind of thing happened a lot when i first got sick, but not since. now it's recurring again. accompanied by almost daily wheezing type symptoms. blah.

gena. the following are some short-term *cures for severe crisis type tachy episodes. 1) some paramedics taught me this trick. you do deep breathing, except between the inhale and the exhale you wait for 2-3 seconds and bear down slightly on your diaphragm. then you exhale more slowly. so: deep regular breath. hold and tighten your stomach muscles a couple seconds. exhale. repeat. apparently, this acts on the vagus/vagal nerve to slow your heart rate. 2) elevate your legs really, really high (i usually put my legs straight up against the wall). 3) this works if you have someone with you. ask them to breathe deep and regular, and try to copy their breathing. try to focus on them and not on yourself. this will avoid you getting yourself worked up about your HR/palps which will of course make them worse.

ginger: i get tachycardia upon standing, but in the virtual absence of hypotension (most days). that is to say, my BP drops ever so slightly, but not enough to be classified as orthostatic hypotension (although i HAVE HAD orthostatic hypotension, just never when my doctor/cardiologist/whoever takes my pressure while standing). justin

interesting about the dental thing. i sometimes do notice myself clenching my jaw a lot...anyway, i have had ear pain, but only recently. like over the last couple of months. before that i can't recall it ever being a significant problem. i have also noticed what tends to make my ear pain (As well as my neck pain) worse. and that is cold. cold winds in particular. after a few minutes exposed to a cold wind, bingo...bad pain in my ears and my neck.

i've had a 3 echocardiograms, 1 holter monitor, all the usual cardiac blood work and of course the ubiquitious ecg/ekg's (had so many of those i'd probably make a pretty good tech myself. heh) justin

caffeine is the worst possible thing i could do to myself. it's more terrifying to me than the prospect of, say...hiking for 10k with a 50 pound backpack. instant symptoms.

thanx for the feedback...i think i've settled on plane instead of bus...if only because it means being in transit (and thus feeling bad) less. and i really should confront the fear, anyway. one thing i was worried about was that at cruising altitude the oxygenation in the cabin is only about 3/4 of what you'd get on the ground, even with the cabin pressure...but i've been through it before, and i guess it's only for 4 hours flight time... i will remember to stay hydrated, though.

ok, i haven't flown in a couple of years, since before i got really sick with POTS. and i'm frankly pretty terrified at the prospect of going to the west coast this week. i'm seriously considering taking the bus, which will mean a 65 hour trip instead of 4. that's how badly i want to avoid getting on a plane. part of me knows it's unreasonable to be so paranoid, but i remember the last couple of times having really bad anxiety attacks and breathing difficulties when we started taking off. and then weird headaches and pains when we hit 30,000 feet. so, yeah. i'm a hypochrondriac when it comes to planes. others have tips?

so. i now have access to ativan. athough i don't plan on taking it on a regular basis (just for crises) i'm kind of wary... i know Dan had tons of experience with it...remember reading his many posts way back when...but i'm curious who else on here has anything to say about it. gimme the good, the bad, the ugly. justin current meds: atenolol, celexa

wow, been such a long time since i've posted on this forum....been in hiding ...anyway... it's ironic and good that i logged in today to see this post...because all this past week i have been having exactly the same thing happen...hah. new symptoms, i mean...the first, which was a few days ago, was some kind of paralysis accompanied by slow breathing and pins and needles in my face, neck, arms and chest. it eventually went away, and then i felt really naseous for hours. this cycle has repeated itself three times since then, the most recent being last night. i don't know what to make of it, and i too am faced with the "should i do something about this or just ride it out" dilemma. once again, it's nice to know i'm not the only one.. justin

hey. i live in toronto. i've heard mixed reports about dr. schondorf, but he and his colleagues are the only real specialists in canada i've heard of (although there may be one in hamilton, ON too).

had both. with the colonoscopy, the worse thing was the dietary restrictions a few days beforehand (as if i already didn't have those issues...) and particularly, that sodium-type solution they give you to drink the night before. it gave me really bad hypertension and tachycardia and, for some strange reason, a headache and fever. endoscopy/gastroscopy...the sedative made me feel really messed up for the rest of the day, and i had a fair amount of reflux/pain/discomfort in my upper GI tract for a few days afterward. on the plus side (if there is one?) i told them about my condition beforehand, and they gave me an IV bolus before the procedure, so everything was ok in that department.

big time. actually, they're usually not little twitches, either. most of the time, one side of my body will jerk (no particular side that i can remember) when i'm lying down.

my immunity is terrible. ways i try to deal with it: no animal products. supplements. avoid sugar/simple carbs. sunlight (when i feel up to it/can get it). moderate exercise (when i can get it/feel up to it). as many raw foods as possible. sleep.

i'm not sure how long i've had POTS, as i can remember being mildly symptomatic in high school...but there were years of difference between then and when i got really bad (which was the end of 2002). so, i've had it full blown for over a year now. so, who knows if it was viral or genetic or what...