hyper-wha?

on to HPOTS... Hyperadrenergic (hyper-add-reh-ner-jick) Postural Orthostatic Tachycardia Syndrome.

reminder- SYNDROME does not mean DISEASE. this is more like a state of being. there is no virus, tumor or random axis of evil to fight. my body is just, well reacting differently to the environment than yours. so what i do is manage "symptoms"- which to me actually seem "normal" at this point. and of course, my lovely genetic code is the underlying factor. i don't see this as a problem, more of an exciting challenge of existence. ha, you people that stand without thinking about it! you know nothing of how to be in your body!! :) ok, bit of an exaggeration, but you get it... no whining, just how it goes...

ok. so the human body has this wonderful system called the autonomic nervous system. it does all the stuff you don't have to think about like decide how fast your heart should beat, maintain internal temperature regardless of external temperature, decide how much pee to make & dilate or constrict your pupils. the 2 main parts are the sympathetic & parasympathetic. basic overview- sympathetic is "fight or flight" portion, it is what gets you going, kindof like your accelerator where as parasympathetic is "rest and digest" portion has a more calming effect like your brakes. they work to complement each other & keep your body in a nice even homeostasis.

HPOTS is a type of dysautonomia. dysautonomia is a broad term that describes any malfunction of the autonomic nervous system. there are actually different types of dysautonomia & different types of POTS, hyperadrenergic postural orthostatic tachycardia syndrome is the type i have. as a general term, POTS basically boils down to the autonomic nervous system not responding properly to changes in posture & other "normal" sensory changes- so you get an orthostatic tachycardic response (not maintaining proper blood pressure or heart rate/blood flow) to a change in body position or situation. so stop and think for a moment about how freakin' amazing it is that you can stand up... do you know what your body has to go through every time you do that? there is a major change in gravity, to keep all your blood pumping around your system has to constrict all your blood vessels so that all your blood doesn't just pour down in your feet. then it has to adjust from that initial "WHOA" change to find a happy medium where you can happily stand with a stable blood pressure and heart rate. in a person with POTS, this does not happen. that "little adjustment" to gravity just doesn't occur. but, there you are standing- so your blood pressure changes (depends on type of POTS how it changes) and because your blood vessels aren't constricting properly to maintain blood pressure your heart rate skyrockets in an attempt to keep blood flowing. technical diagnosis for POTS- a sustained change in heart rate over 30 beats per minute from laying down to standing. a study showed it takes a person with POTS 3x more energy to stand up as a person without POTS. (if i cite something, check http://www.dinet.org/ for more info)

my "at rest" heart rate is low 60's. my "standing" heart rate is dependant on a lot of factors- first thing in the morning it is usually around 120 (as in, all i am doing is standing brushing my teeth or feeding the dogs and my heart rate is 120), once i up my fluids  & IF i am having a stable day i can get it down to the mid to high 90s- if i don't stay standing for more than 10-15minutes at a time. tho stable is not a word to describe POTS- any given day i go from mid 90's to low 120s when standing. and by standing, i mean standing still. little known fact- your heart isn't the only muscle responsible for getting blood to move around. when you move the contraction & relaxation of your muscles help out! so i can be stable standing for longer if i am moving around. heat is also a MAJOR factor. this is one of the weirdest things for me, i've always been able to tolerate heat. cold never, but heat- i'm well known for my ability to wear a sweater in florida august. all of a sudden- i'm hot! and i can't breathe! wtf?! well, when i started wearing a heart rate monitor i figured out the problem. my heart rate was easily going up to 160 (highest i noticed was 182- idly meandering the garden department at home depot). in the heat your body sends a message to open your blood vessels up to help cool you, but as my vessels open up it once again becomes harder to get the blood to properly flow through them. they expand too much and my heart has to make up for it to keep everything moving. also- i have to wear a heart rate monitor to recognize these changes. usually, i do not feel my heart pounding at all. so in the heat, standing is a real issue- moving or not. when it is really hot, i've recorded changes of 20 beats per minute while sitting just by changing the position of my legs (bringing legs up cross legged in chair lower heart rate than letting legs dangle with feet on floor). ok, so my heart rate goes up, so what?! well for starters, it is exhausting! also just the constant flux, it puts a lot of pressure on my adrenal glands having my heart rate spike, then go down over & over again. and of course, just because changes in heart rate are the diagnostic factor, doesn't mean it is  the only symptom!

vision blacking out is a big one. this was the big, "wait, that isn't normal?" moment for me. all my life my vision has partially or completely gone out (ie just the peripheral vision or everything goes totally black) upon standing. usually if everything goes to full black, i lose hearing as well. this usually happens first thing in the morning, any time i stand up too quickly, and days when i fly or get dehydrated. basically, i am fainting without falling over. i'm still conscious, just standing there- aware that i have lost sensation and patiently waiting for it to come back. usually i can even stand without holding on to something, tho often i will grab a wall or chair for support. if you've hung out with me on a regular basis, chances are it has happened without you knowing. it probably just seemed as tho i 'tuned you out' for a second. well, i did- in fact i tuned everything out. but then everything returns & i go on. since this is "normal" for me, there is a chance i have had some type of dysautonomia my whole life. this can be common for persons with EDS (ah, back to EDS again!) for a number of reasons- that i have mitral valve prolapse, because my blood vessels stretchier (so it is harder for them to constrict) or because my nerves are stretchier (!) and sometimes fire a little wonky. but we'll get to all that on EDS posts. however, over the past few years, as things have progressed into HPOTS a few more things have been happening. the vision blacking out can also now happen just by turning my head. you'll notice i rarely shake my head or do any sort of headbanging. this is because my "sensory input" and where my head is are not always in sync. close observation- i rarely turn my head without "spotting," that is i usually look at something out of the corner of my eye and then turn my head as this helps me to maintain stable vision.

as i said earlier, heat sensitivity. to me this is a totally new experience. i don't think i had ever been hot in my life until i started having hot flashes. at first, i was hesitant to tell my "lady doctor" about them because, well- i enjoyed them! i was warm for the first time in my life! she did look at me a little funny, but her response was if they weren't bothering me then it was fine. i also started to sweat. not sweating can be a sign of dysautonomia- so can "inappropriate" sweating. so before, i used to just not sweat at all. it is still really hard for me to break a sweat due to heat or exercise, most of the time it happens for reasons other than my body trying to cool off- it can happen as a response to increased pain, being cold or just whenever (ie either i haven't found the trigger or my body is just being random). cold sensitivity has always been a problem for me. now that heat sensitivity is a problem- there is a very narrow range of temperature where i am actually comfortable. my brother likes to say that i am "cold blooded." this is actually a good analogy. it is hard for my body to adjust to temperature changes (going from heat outside to a/c inside- while the heat is making my heart race, when i go inside the immediate cold requires a sweater), and i do best in a steady warm but not hot environment. the other problem is that when i am cold, putting on layers- doesn't really help. that internal "turn up the heat" doesn't work for me. i can have on multiple layers, and still be freezing. my system isn't regulating my temperature, so yes i often travel with a heating pad & have space heaters waiting for me. i usually get teased for needing "meat on my bones" for always being cold, true- i am lacking in insulation! but the bigger issue is that my system is not responding to regulate itself.

another issue is delayed gastric emptying... so i eat. and the food just sits there. but since there is food in my stomach my body is sending all the blood to my torso to accommodate digestion, which just takes a little longer to kick in. like maybe 1-2hrs. so after i eat, i usually have much higher swings in heart rate because most of my blood is in my torso & my heart is having to do extra work to keep the rest of it moving. nausea can also be a problem. all that vision going in/out and unstable feeling really doesn't help. overall my digestion has gotten a lot more sensitive. this has prompted many an overhaul in what i eat the past few years. i'll make my diet a separate post but the main change since HPOTS set in, no alcohol. because my system is all over the place, alcohol makes it a billion times worse. i can't even tolerate 1/2 a beer without starting to throw up & get insanely dizzy. giving up alcohol wasn't a big deal to me. sure i miss having a beer at a show or a margarita next to the pool- but the biggest change upon giving up alcohol seemed to be seeing less of my friends. and that was and is really hard. i know it wasn't intentional, but i don't get as many calls to come hang out- which by the way is ridiculous cause i still want to hang out and i make the perfect designated driver.

HPOTS vs other POTS. the primary diagnostic difference with HPOTS, is that we are a rare bunch that has an increase in blood pressure upon standing. usually with POTS because the blood vessels aren't constricting properly there is a decrease in blood pressure as the blood falls towards the feet. that increase in pressure is probably why people with HPOTS usually have "near" or "pre"syncope symptoms instead of full syncope (fainting). this was determined by my tilt table test. a lovely simple test where they strap you to a table, take your resting heart rate and blood pressure, stand you up and monitor you for 45minutes or until you faint. as simple as that sounds- it was one of the roughest, toughest most symptom inducing horrible tests i have ever had in my life (and i've had needles plunged in my neck & spine). unfortunately, my cardiologist really didn't know what to do with me. (actually, this was my 2nd cardiologist. the first told me "drink gatorade and you'll be fine" which was actually not helpful at all). this actually isn't his (either of them) fault. cardiologists usually end up treating POTS because of the changes in heart rate- however, it is not a cardiac problem. my heart is fine, it is my autonomic nervous system that needs adjusting. he tried one med and then told me i just needed to exercise more. more? brushing my teeth at 120 beats per minute is enough in the morning! let alone my yoga practice, teaching yoga & having 3 dogs in the house to wear out. i tried to talk to him about the difference between HPOTS and other POTS but he just kindof vaguely agreed with me and i think he didn't actually know what i was talking about (don't doctors know how to use google?!) technically, i should get a blood test with a tilt table test to confirm HPOTS (they check a neurotransmitter level) but he didn't know what i was talking about so i haven't had that yet. so, i do ask that you trust my research when i state that the increase in blood pressure i had during my tilt table (and it wasn't a little up, it was the nurse "staying calm" while repeatedly going to get the resident to ensure the test should keep going) indicates HPOTS (regardless, i have a POTS diagnosis either way). also, that i didn't faint but was seriously symptomatic: i could barely talk- was slurring my words, drooling, had very narrow tunnel vision & had problems hearing & responding to the nurse. there are docs that treat HPOTS, but the good ones seem to be out of florida (ohio looks promising!). i should make an appointment. i know. but i am tired of doctors! i want to just live my life. so at the moment i am managing, and doing pretty well.

how i manage-
*major change in diet & eating lots of small meals instead of a few big large meals
*not letting myself stand still for long periods of time- why i'm always sitting at shows. leaning can help too as it just helps me feel steady.
*wearing a heart rate monitor when i know i'm going to be up & about esp in the heat. since i don't notice those higher swings in heart rate, with the monitor i can catch them and sit/settle down and then keep going instead of just keep pushing through the higher swing. so if you see me wearing a rather ugly blue digital watch- that is my monitor. it gets info from a strap i wear around my chest. since it is made for exercising- it beeps whenever the monitor gets close to the strap. i find it annoying & apologize.
*sitting or at least leaning whenever i feel a 'start' of changes (this is hard to describe, one POTS person said something about it feeling like someone put a net over you and you are getting dragged underwater. that is darn close) which can be in public- i don't care if everyone at the grocery store is staring at me, i will sit on the floor in the check out line. i also usually get a push cart when shopping- works well to lean on and also i don't have to carry anything (which can also make symptoms worse). one of the things is that if i catch stuff early- i can get it to settle down. if i let it go- then i can be laying down with a heart rate of 115+ and then oddly when laying down i can feel it pounding away and it just does not settle down. sometimes holding an icepack to my chest will help but mostly it is just "wait it out" at that point.
*managing my energy- if i know i have to do something later, i will conserve my energy earlier. this means if i take the time to hang out with you, i want to. a lot of my day goes towards how i will fit a nap or "down time" (literally laying down- reading or something) around the things i have to do (including eating).
*shower chair! the heat + standing makes showering actually quite difficult. tho i did manage to take my first "quick" shower without losing vision the other day, overall i usually use my shower chair to get through a shower. especially if i have to shave my legs (bending over and standing up makes for all sorts of dizziness). there are fancy shower chairs at medical supply stores- i just bought a plastic lawn chair, works awesome.
*custom island in kitchen- my brother made me a 'table height' island in my kitchen. this way when i have cooking that would usually involve standing for prep- instead i can sit to chop veggies, mix things etc.
*salt! with HPOTS you have to be a little careful with salt vs other POTS, but overall i still have increased my salt intake. the increase in salt helps me to retain fluids. higher fluids means higher blood volume. which means less work for my heart to pump it around. so i also drink a lot of water & caffeine free tea.
*continuous birth control (!) the autonomic system does a lot with hormones. the simple explanation- by being on birth control, i have taken over regulating those hormones so my body doesn't have to- giving it more time and energy to concentrate on regulating the other things it is supposed to be regulating. while there have been a few hiccups to the continuous birth control, i will spare my male friends the details & say i am finally in a place with it where it is really making a difference. plus- only having my period every few months is awesome.
*pranayama (yoga breathing). this helps me a lot. however, it is very difficult to explain to my doctors & because it helps me to manage my symptoms, sometimes makes my symptoms seem like less of an issue than they actually are. i do very simple 3 part breath, making my exhale 2x inhale or alternate nostril breathing. i do not do any "energetic" breaths as they quite literally fry my system within a couple rounds. for those of you that don't know yoga breath work- sympathetic oversees inhale, exhale is parasympathetic. so, if you would like to directly communicate to your autonomic nervous system- do it via the breath. since my sympathetic system is what is overloaded- i work on lengthening my exhales to help engage a parasympathetic response in my body.
*acupuncture. i have a weekly appointment on tuesdays, when i miss it my body freaks out. my acupuncturist is about to have a baby... agh! the changes were slow, but becoming more steady. kindof an overall "evening out" of how energy moves through my body- which is really hard to describe!
*saving for a golf cart! seriously. the one thing i really miss about not standing- walking my dogs. my plan is to save up for a golf cart (unfortunately i think it has to be "street legal" (seat belts etc) to drive it around the neighborhood) and then i can run them around without completely wearing myself out. as it is now, i can walk them, but then that is my only "active" activity of the day & never in the heat. this is why malcom & i play pool fetch a lot. it can wear him out, but all i have to do is sit.
*i debate discussing getting a walker that has a seat in it with my doctor. i know it would be it would be helpful & i would only have to use it on occasion. it is nothing more than pride keeping me from asking.

that is the gist of it. if you look up info, it will say something about having a trigger- i can tell you with utmost certainty that i know when things got worse. when i was anemic (EDS related) &  i had an allergic reaction to intravenous iron. i remember telling the doc that it felt like the RSD took over my entire body. and after that- even tho my anemia was getting better, i was on a down slide. and i couldn't figure it out. well, RSD, fibromyalgia & HPOTS are all on the same spectrum. the fibro had started in my late 20s, and that full body allergic reaction (that required a trip to the ER the next day as things were still off) just tipped me over the edge. i physically remember that my body has not felt the same since that day.

ok, enough out of me... here is a lovely site about POTS...  http://www.dinet.org/