justin

how do i sleep? well, it's 4:25 am as i write this, so that should give you some idea. i'm on a terrible schedule that i can't seem to get out of. i sleep days and am up nights. although even with normal sleeping/waking cycle, my sleep has been terrible (with a capital T) since i've had POTS. this is a particularly distressing symptom for me, because i have always loved-loved-loved sleeping. when i was a baby i apparently slept 15+ hours a day, and i guess i never grew out of it. as an adult i would sleep anywhere from 9-12 hours a night. if i get anything less than 9, i'm a wreck. 10 is optimum. it's telling that since i've had POTS, i haven't been able to achieve my normal sleeping patterns at all. not once. not a single night/day/whatever, for over a year. maybe that's why i'm so messed up. maybe i just need some sleeping pills, and POTS is just a side effect of insomnia. yeah?

(if this has already been posted, my apologies. the memory, she is is not so good these days...) i was reading recently that acupuncture reduces the activity/overactivity of the sympathetic nervous system (a problem for many of us). i'm intrigued. although i've had acupressure type massage before (shiatsu) i've never had acupuncture. anyone ever tried it? if so, what was the effect?

yeah, i shook a lot too and also had problems swallowing. both of those things are a lot better now. it took a few months for those symptoms to subside. the shaking/tremor thing was really weird. it wasn't quite a tremor, it was more like my body was nodding back and forth all by itself. you know when people are going through a really traumatic event or mental disturbance, and they rock back and forth? kind of like that, only rocking very slightly. i would usually notice it when i was sitting in a chair. strangest thing. also, a lot of times i would involuntarily twich, or an entire limb or side of my body would suddently jerk. i still get that. most disconcerting.

haha aaahhhhh yes......well, i've probably mentioned this before. i am 6 feet 5 inches tall, and have always been at least 30 pounds underweight for my frame and height. i am pure ectomorph, my metabolism is super fast, and there is simply nothing that i can do about it, in spite of the thousands of taunts and jokes i've endured in my life. my 'normal' weight was 175 pounds. once i got up to 182 (an all time high i hit for a few months soon after high school) and once down to 164 (again, for a few months) but for years i was solid around 175. when my POTS first got really bad, i dropped an additional 30 pounds in 1 month (a pound a day) until i was hospitalized. then i gained a bit back. a couple of weeks after i was discharged, i lost the weight i had gained back and ended up somewhere in the 140's. that's where i bottomed out. it was a freakishly bad time in my life with eating, body weight, and gut problems, and i was no newcomer to those kind of problems. i'm now back to 165. in fact, i've been there since the summer of 2003. i can't put any more back on, i can't even hit my usual weight of 175, which is very frustrating and fatiguing. if i eat 'normally' (whatever that is) i stay the same, if i don't eat enough, i stay the same. i get very upset when people complain to me being slightly overweight (present company excluded, of course) because being underweight can be extremely debilitating, and can come with all sorts of mental baggage, ED's, and other stuff. it's such a fine line, and once you cross it, it's so hard to continue to care for yourself. but still, i guess i am thankful cause some people have it much worse with feeding tubes et. al on a regular basis. and kudos to those of you who deal with that. you are troopers. anyway, that's my rant. justin

nothing that i do can change the fact that my extremeties are absolutely freezing almost all of the time (except in summer). they are so cold, in fact, that when i touch someone's bare skin with them they scream. even in my -15 Celsius rated sleeping bag in my bedroom at night, my feet particularly are like ice. thick socks don't help, but interestingly, sleep does. when i wake up in the morning, everything feels even temperature. i find winter way worse for all of my symptoms (with the noticable exception of tachycardia and palps, in which case summer is definitely worse). i'm afraid to go outside in winter anymore. breathing cold air is a particularly bad experience. it brings on these asthma-type symptoms that are kind of frightening.

hey i too can relate to school problems. i got POTS towards the end of my third year, and eventually i had to drop out because of it. but for the first little while, i kept trying to drag my tired *** to campus, and would turn back halfway to class and go back to bed (and i lived practically right next door...). in retrospect, it was pretty comical how hard i tried to make it through, but at the time full-time POTS and full-time school was murder. they just didn't mix. i'm thinking about part-time, but i'm not sure yet.

my mom also had symptoms of dysautonomia. i think they started when i was in junior high and resolved within a few years. she says she eventually found some triggers (mostly caffeine) and by avoiding them she wasn't symptomatic anymore. so, yeah, i believe in the genetic link. i also have really long fingers...but, then again, i'm tall and skinny...so all of me is kind of long. but i don't have EDS. at least, i don't think so.

huh, sorry i never replied to you. i forgot. redundant now, maybe, but....i do take magnesium, yes. although not anywhere near as much as you do. maybe a third of that? it's a calcium/magnesium combo...

i used to have a lot of nausea as part of this illness, but it's tapered off somewhat. things that helped me were ginger (either tea or candied ginger) and eating smaller meals. you can also learn pressure point massage to do on certain points of your hands/wrists/legs that relieve nausea and other GI problems. i found it made a bit of a difference. and on a purely hypothetical note--for really bad, chronic nausea, one can't do better than marijuana (if one were so inclined). it's a very good anti-nauseant (not to mention an anti-inflammatory, a pain reliever and a bronchial dilator). just fyi.

on the topic of veins, i too have some weirdness. the veins in my hands and feet, and to a lesser extent, my forearms and calves, really bulge out a lot (depending on how warm and/or hydrated i am) in comparison to everyone else i look at, and it's also somehow tied to gravity. if my arms are hanging down at my sides for more than half a minute, my hands resemble ahh-nold back in his conan the barbarian days. ditto with the feet when i stand in place. and when i come out of the shower or bath, my feet do the same thing. in fact, they look like they are about to explode, and they get really purple (or some kind of red/blue). this started happening around the end of high school, and i never thought much about it except that i thought it looked strange and kind of unattractive. but then i found out about the blood pooling in the limbs thing, so it could totally be related to POTS. or not. but probably is, i think. the shower thing is the kicker for me. it makes sense. so, i guess i have the opposite thing going on, tim...

got it. thanks!

thanks for the link, nina. i checked it out, but i still don't understand it's relationship to POTS?

i don't even know what that is. ...what is it?

ok, so, as we all know. water and salt are two big things that really help with POTS symptoms. my question: how much water do you drink? i'm curious. i'd like a representative sampling here. my ideal amount, the amount which seems to make a difference without spending too much time in the bathroom, has been around 2.5 litres (or liters, for you stateside people). does anybody drink more than that? or more than 3?

i tend only to have diastolic hypotension these days (which i believe is defined as a drop of more than 10 mm Hg)..it used to be both values would drop, but no longer. usually my diastolic is in the low 60's, but it can range anywhere from 55 to 70. systolic is near normal in the 110's. a quick unrelated note: after my 3 month trial of beta blocker, i tried going off it. i lasted a week and didn't feel like dealing any longer. i was much more symptomatic, and my HR went right back to where it used to be. 80 lying down, 90 sitting up, and 120+ standing. plus i had lots of skipped beats and palps again, and i think remembered how annoyingly bad they feel. soooo, i called my cardiologist and he said "well, if you feel better on them, keep taking them" and gave me a scrip for 6 more months worth. wow, what profound medical advice. i'm in awe. so i'm continuing with them, even though i hate all the side effects, but i'm gonna demand a different drug route at my follup appt in february, cause it's just not enough.

celexa has the lowest side effect profile out of all the ssri's...although everyone's drug reaction is different, so it still may not be that great for you. personally, i seem to have a sensitivity to drugs generally, but after two weeks on celexa all my side effects vanished completely. i also tried zoloft, and had a terrible time on it. stuck with it for three months, but it was still doing me in at that point. anyway, in terms of anxiety and energy and ssri's, celexa is the only one i know of in the family that is actually sometimes used specifically as an anti-anxiety med. for energy, wellbutrin, because it acts primarily on norepinephrine and dopamine (which would help with energy) and is also a weak seratonin agonist.

i don't work, although i'm no longer bedridden. right now, i'm applying for long-term disability. that decision could take up to 8 months. in the meantime, i'm on social assistance--with a medical exemption so i'm not required to look for work. you gotta push these jerks sometimes; if you can't work, you can't work. sometimes, i have to get very in-your-face with social workers or doctors. if they don't like it, well, too bad. they can cry me a river as far as i'm concerned. good luck! justin

my chest pain is somewhat less of late. but usually i get it every day to some degree---ranging from ocassional mild discomfort to a couple of hours worth of on-off stabbing type pain. i also find the skipped beats harder to deal with. and they're exactly as EM describes for me too. i don't find that there is any correlation between it and the chest pain. most of my chest pain is on (my) left side, under the arm, although it varies.

i have had frequent -some documented- episodes of bradycardia, both on and off the beta blocker that i take (atenolol). the lowest it's been on a monitor was 42 bpm. when i was very ill last winter, i had almost constant resting bradycardia in the 40-49 bpm range, irrespective of my standing tachycardia. since i've been on the beta blocker, i've found my HR to be a bit more uniform--less extremes. the lowest my HR gets now is around 50, resting of course. upright is another story entirely.

since i was a baby, my temp has always been 1 degree celsius lower than normal (this would be 97.3 for you farenheit types). when i have a low grade fever, i would be at the normal range (98.6). recently, my temp seems to hover around 95-96, and can sometimes get as low as 94.1

hey---we'll continue to be thinking of you. keep us posted.

i had this. i would try to swallow, but it was like i couldn't make myself do it. everything worked fine, but my brain somehow couldn't send the message properly. i don't often get it anymore.

about the safety issue: if i'm not mistaken evening primrose oil is a source of both vitamin E and vitamin K. both (especially vitamin K) act as blood thinners. so if hypotension is a problem for you, you might want to keep the dosage low. i've been taking evening primrose oil for a couple of weeks at a low dose (not for PMS, obviously), with no noticeable side effects in the POTS department.

this is one of the first symptoms i ever noticed. when i brought it up to the specialist i was seeing at the time, he said it was fairly common and related to the transition from the parasympathetic to the sympathetic nervous system (i.e. coming out of sleep). i find it goes away if i get up slowly...

i had both the sigmoid(colon)oscopy and the gastroscopy. they suck. big time. the gastroscopy is worse, though. anyway, they both came back negative. no celiac disease or sensitivity or leaky intestinal lining, which is what my gp originally thought might be wrong... justin