bunny

Anxiety/panic is the only thing I've found which exacerbates the POTS symptoms. For example, blowing past a hidden highway patrol car on the interstate doing well over the posted speed limits. (purely hypothetical, of course! ) My heart rate while driving is ~60-80 depending on how crazy it is out there, but will shoot up 100+ bpm to 180-200 bpm in about 2 seconds flat. Then the dizziness kicks in. Otherwise my emotions are very slow to change. Slow to anger, slow to cool down. I have cried myself into electrolyte imbalances, but that's a bit different and easily remedied.

I've had multiple periods of hair loss over the years. 90% of them were due to either not getting the proper nutrition or GI-malabsorbtion issues. I've also switched to sulfate-free shampoos and use as little shampoo as possible, sometimes just using water. I'd say the remaining 10% lies between the shampoo & stress (both physical and mental). Don't underestimate the stress part, particularly in getting enough quality sleep. I'm actually regrowing hair quite nicely and my barber usually comments upon it each time I get my hair cut. Baldness strongly runs in my family, so I'm not expecting a full flowing head of hair, but to be regrowing hair @ 34 without any drugs/supplements feels mighty good to me.

Add one more vote for "get a second opinion". I went away to a Uni far from my hometown, so eventually I needed to see a dentist. I think I was 24 at the time. I set an appointment for what I thought was a cleaning/x-rays. Instead, it was a "consult" appointment where they took x-rays, made moulds, etc. I then had to come back for a 2nd appointment for the results of what was needed. The dental assistant walks me to the room and the first thing she says/asks is "I didn't see any dental insurance on your forms. How's your credit?" Bad sign #1. I sat in the chair for awhile, waiting for the dentist, who was running late because he was too busy talking with the granite contractor on replacing the countertops in his dental office. The existing cabinetry looked only about 2-3 years old to my eyes. Bad sign #2. So, he basically wanted to remove every filling I had, do about 8 crowns, a couple of root canals, a few extractions (tooth removal) etc. Grand total: $28,000. I left there stunned. I was only 24 and didn't have great teeth, but didn't think there was THAT much wrong either. So I called a good friend who was in dental school at the time and told him the findings. He was in disbelief as well and strongly suggested a 2nd opinion. I saw another dentist the following week who looked at the x-rays the 1st dentist had done, pronounced them as useless, took his own x-rays (and didn't charge me for them), then showed me the difference. The digital x-rays the 1st dentist took were so grainy it was difficult to tell what was going on. The 2nd dentist's film x-rays made it quite clear even to my untrained eyes -- One crown needed, nothing more. I believe it was approx $300 with insurance. As far as the epi / non-epi goes, I've had it both ways and I'm very hypotensive when laying flat (~85/35 most nights). For me, the non-epi does flow out so fast that they might as well not use it. Any pain relief is gone within 5 or so minutes as the drug gets washed out. My current dentist uses the procane+epi and I haven't had any issues from it. We usually start without it and see how much pain I can take before resorting to it and then he uses it sparingly. My pain tolerance is relatively high so they can usually "ouch" me a few times and it won't bother me too much. Any tachy I have is usually from the anxiety of having sharp, whining instruments being poked and prodded into my mouth, as once they're done with the drilling part, my heart rate drops substantially. Also as an aside, good oral hygiene practices go a long way to avoiding/reversing scaling. I do have the electric toothbrush & prescription toothpaste my dentist recommends. I don't floss, but I do use an oral irrigator (waterpik) 2-3x a day. I have a regular-size Water-pik at home and a Panasonic portable I use at work (after lunch) and on the road. Just had a cleaning last month and the dental hygienist was having trouble finding anything to scrape.

Multiple ER trips haven't ever yielded a definitive dx as to the origins of my chest pains, so I've given up on that route. Instead if I happen to be home and chest pain strikes, I usually pour half a glass of wine, relax on the couch and listen to some good music (usually classical/jazz/world). Hard to say if it's truly addressing the chest pain or just making me feel better. It works well for the latter, which is all I'm concerned about for now. I also find it far more palatable, enjoyable, and less expensive than an ER visit. It also helps that I'm not taking any meds, so I don't have to worry about interactions with the alcohol.

The port does change things, but only slightly. Signs of infection (aches, fever, swelling) are something you should definitely call on. Otherwise, know your body's "normal", including the undesirable effects. New symptoms or a change in symptoms is when I take notice.

I've fortunately avoided major surgery thus far, but laughing gas had absolutely no effect on me. Novocain injections are extremely painful for me no matter how/what the dentist does, so I usually go without, and I have fillings in most of my teeth. I fortunately have a somewhat high pain tolerance, so they'll usually drill, I'll squeak when they hit something, wait 10-15 seconds, then they'll go at it again. Over-the-counter pain meds (and even codine) are useless. I think it might be that by the time I'm feeling pain, the pain is so severe that those wouldn't have worked even for a normal person.

Jen, I find your background rather familiar. My family life was chaotic. Mom was bipolar + poss. schizophrenic, Dad was bipolar. Avoidance was one of their favorite strategies, so both heavily self-medicated with various things, usually prescriptions (tranquilizer du jour) and/or alcohol to wash it down. I never knew what I was coming home to. It was a very insulated family, so whatever happened at home stayed at home and there weren't any relatives nearby. I didn't know that this was abnormal and just tried to do the best I could, figuring that everyone else my age was going through the same thing at home and equally was told to keep it at home. Now that I look back, I'm not sure how I managed to make it with so few broken bones and how I stayed sane. I also found myself falling into a relationship where my girlfriend ended up being almost a carbon copy of my mother. Similarly, I'm now dating a woman who is gentle, kind, and caring -- indeed the exact opposite of what I was raised with. Indeed, what I've been through has made me appreciate her and each day more & more. I also find you calling each day a gift hitting very close to home. I still very clearly remember my first hospital stay. Well, not much about being brought in as I was out of it -- I was carried in by friends as I was too weak to walk/stand, was having trouble reading/understanding English (but for some reason I apparently could still read & understand Spanish), and fading in & out of consciousness, mostly out as the day progressed. When I finally woke up late the next day, I knew I had cheated death. First that cheesy Hollywood out-of-body experience apparently has some truth to it. I remember my sense of hearing waking up first and hearing the noises of the hospital, the IV pump, the feeding tube pump, the beeping of the monitors. With my eyes still closed, I felt the coolness of the sheets, then ran my fingers over my body and realized I was still alive. It's the most amazing, exciting, yet humbling feeling. I wish everyone could somehow feel that without having to be near-death to experience it. They would never live their life the same. Indeed, I've viewed every day since then as bonus time. At the end of each day I'm still praying, thankful to have had the opportunity to experience just one more day, even if it was one I'd not want to remember. I still got that one more day nonetheless. I also think you're probably right on the prolonged stress hormones being a factor in this. Stress has all sorts of physical ramifications. By all means, look over your past and view it with a great sense of accomplishment. You ARE a survivor, a successful one at that. If you can make it through all of that, you're definitely going to make it through your autonomic & autoimmune issues. This is a mere speed bump compared to the mountains you've already scaled.

I was dx'd in my 20s, but when I dig deeper, I keep finding things which suggest this has always been an issue for me to some degree or another. I remember being excessively sensitive to hot humid days outside, getting chilled easily, low bp, dizziness, nausea, GI issues, and passing out for about as long as I can remember. I know back when I was five or six years old, I had trouble getting up and my stomach couldn't handle food until I was at least up for a couple of hours. I still have similar issues now, but they correlate exactly with my blood pressure & pulse, so I'm pretty sure this was going on back then as well. I like exercising but always hated PE class because I just didn't have the physical endurance to go at the pace they wanted for that length of time. I had the mental endurance and would have no problem pushing my body until I collapsed. Collapsing "fixed" the PE class problem and would get me out of PE for a year. Not complaining at all about that. I'd much rather exercise at my own pace and in a more controlled environment. Summer camp outdoors also was brutal as well. Sadly, I didn't think much of it and assumed that everyone went through this until I was in high school. That's when I started asking questions, asking others how they handled these symptoms. That's when I learned that this wasn't normal. Naomi's comments about sitting on the floor made me laugh -- that's what I'm doing right now! and I've always preferred sitting on the floor. I also prefer to sit in the fetal position most of the time. Even if sitting in a chair, I usually find myself subconsciously bringing a leg up, if not both, and usually am reclining the chair as far back as it will go.

Correct me if I'm wrong, but isn't Magnesium also used by some for migraines? If so, the inflammation theory might well prove true. I know I've come across a few articles over the years which suggest heart disease may be caused primarily by inflammation as well.

I don't have much bodyfat, so I get chilled quite easily. I seem to be able to handle lower temperatures alright once my body adjusts to them (takes about 24-48 hrs), but add any sort of a breeze and it's instant chills that need an external heat source to shake off. So overall, I prefer warmer temps, but hot + humid really wears me out and makes me POTSy.

Abbyw: Thank you for such kind words. I don't know that I'd ever think of myself as amazing. Others yes, myself, no. I like to think of it as I'm just too stubborn to die. I think some of my doctors would agree with my stubborn theory. They say The Lord only gives us what we can handle. At times I wish I wasn't able to handle so much. Compared to where I've been health-wise, this is actually the best I've been since I was a young child. As a result, I actually feel fortunate and thankful that my ailments are what they are today. Everything's relative. The lower the depths you've reached in life, the greater the enjoyment you get from the pleasant parts. Yes, even two kind sentences of a stranger on the internet bring a warm smile to my face.

Here's a retired NASA MD with a similar viewpoint: http://www.spacedoc.com/Blood_Pressure_How_Low_is_Too_Low Although the data he cites includes non-heart-failure patients.

Fainting and eating disorders (anorexia/bulimia) tend to go hand-in-hand with the more severe cases. Also with the most severe cases comes long-term damage. I understand exactly what you feel w/regards to losing brain function. Fortunately my focus is back as long as my brain has oxygen, but speed/agility were substantially less. I used to be one of the top math students in the country. Now I'm reduced to a calculator for even basic math. Strangely, I can still do calculus in my head, which is often how I'll back-door calculations of basic math these days. It's changed my personality quite a bit as well. I used to be hyper-focused on math & science. Now I'm far more balanced in my strengths and my creative side has flourished. I'm also far more laid-back. I used to be a type-A adrenaline junkie. Now I'm perfectly content to sit back and watch the world go by. Also, some 12 years out of the worst of it, my brain actually has started to recover. I'm noticing memory improvements and occasionally parts of my mind will fire back up again. I think much of it has been re-assigning of tasks to different parts of the brain, but I also sense that some of the damaged areas have somehow repaired themselves. In some cases, I'll remember things I'd completely forgotten or even have blocks of time in my memory reappear. Quite encouraging. So the brain CAN recover from many things. It's just slow and often frustrating. Sometimes I don't realize just how far I've come until friends mention it. Tilt training didn't start being effective for me until I consistently did it daily and pushed myself well into presyncope, sometimes syncope. Initially all it did was make me feel rotten, but over time it's paid off. Considering I only lasted ~6-7 mins for my first tilt table test and I can do an hour now, it's working for me, even if it's not the most pleasant thing in the world.

Add me to the "feels worse" column. I LOVE the feeling of a nice hot bath, but I've come too close to fainting while in the tub to risk it. I'm usually very unstable/dizzy when trying to get out of the tub after a warm bath.

I had quite a few fish from my college years onward. Freshwater only. In general, any fish which was hearty didn't do well in my tank. Anything which was considered tricky usually thrived. Clown loaches are my fav. After awhile mine learned to recognize me and would make snapping/clicking sounds if I hadn't fed them by 9am. Somewhat annoying when you're trying to sleep in on a weekend. Loud too.

Let's see. Lots of questions. Injuries: countless bruises, cuts, scrapes, chipped a front tooth, and broken wrist. I don't find myself getting seriously injured all that often these days, mainly because of the precautions I take and being aware of my body's patterns and health. Still get the occasional bruise. I've already suffered enough dain bramage from anorexia, and the brain shrinkage thereof makes me even more susceptible to a concussion. I do wear a $30 double-layer foam karate helmet when I'm starting to feel rough or will be putting myself in a situation where I usually am symptomatic (exhausted, showering, eating a heavy meal, sick, etc.). I wasn't anywhere near as compliant about wearing it until I chipped a front tooth just as I was getting out of the shower. I'm still not a real fan of wearing it, mainly because I try to think that I'm not sick and want to live a normal life. I've been slowly getting more accepting of the fact that I am sick and that I do need it. Slowly being the key word. I also have osteoporosis and have since my teenage years. When I broke my wrist, it was a fall where I didn't go completely out but just lost my balance. That took over a year to heal, with 6+ months in a full-arm cast, another 6 in a hard spllnt. So, I often will put on wrist braces at the same time I'm putting on the helmet. As the many marks on the helmet and braces attest, they've served their purposes many times over and kept me from sustaining any head/wrist injuries. I'm not sure if I'm more cautious when wearing them or if they somehow have helped, but I'm having fewer & fewer "how and when did I get that bruise?" moments. I keep tabs on my body and have been very open with my friends about my condition, so we all know what to expect. It also saves me from having them panic if I pass out when they're around. It's not uncommon for one of them ask me to check my vitals if they think I'm not doing well. It's nice to have a second (or third or more) set of eyes' objective perspective on what's going on. I do check & log my vitals a couple of times a day, but I don't worry about it. I use the data to see how my body's doing in the long-run and also as a heads-up as to what the day might bring. If my BP's low at night, I know I'm probably going to have a tough time waking up. Low BP in the morning and I know the shower will make me dizzy and to skip a heavy breakfast. If I'm sick (or getting sick & don't even feel it yet) my pulse will be higher than normal. There's more, but you get the idea. I see checking vitals as a tool, rather than goals. I don't obsess over the vitals #s any more/less than I would the temperature gauge outside -- it's just one of many signs I can use if I wish to find patterns. If I go a week without checking them, no problem. No worries. They can be reassuring though. I've been blessed to have a very keen sense of balance. I can be very dizzy yet still manage to keep myself upright using visual cues. Feels weird but works...until my vision starts to black out and then I'm left with no references for balance and usually feeling quite weak by that point. When I faint, I crumple to the ground. I don't know that I'd call it graceful. It's more a matter of planning. I usually get a warning so by the time I'm ready to faint I've tried to get myself into a safe place/safe position so passing out won't cause my body to move or at least I'm a lot closer to the ground if I do go down. Sometimes I run out of steam/balance before I can get to a safe place. I do have two friends who faint somewhat regularly and I've seen both of them pass out before. Both of them have had multiple concussions from fainting. One is the crumple-type, the other one tends to fall backwards with her legs locked. Quite scary to see her hit the ground that way, even if it was on carpet. Kind of off-topic, but is it possible for you to get a tilt table or supine stander for home? I'm wondering if maybe a tilt table/stander at a very gentle angle, nowhere near the normal tilt table test angles, might help. I know physical therapists use this approach in rehab facilities with people who've been bedridden for an extended period of time. I also know that all of the major space agencies out there use this as well. Your dysautonomia may not be due to deconditioning, but bed-rest of any major length will cause deconditioning. Fun blog of a participant in one of NASA's bed-rest studies: http://pillownaut.blogspot.com/2009_05_01_archive.html Of note, she was a "healthy" young woman at the beginning of the study and showed the classic symptoms of POTS after an extended time of bedrest. Hang in there and stay safe! Some day this will all be behind you.

Always had it. The more I dig into my past, the earlier I see the signs of it in my life. Gradual improvement over time. I was quite surprised that symptoms of POTS/NCS didn't drastically improve upon recovery from anorexia, but digging deeper I find that POTS existed before onset of anorexia.

Comedy. Comedy. Comedy. Laughing's good for you! Many times the comedians' jokes remind me that there are worse things in life. Learning to take pleasure in life's simple pleasures, such as the warm feeling of the sun on your skin (even if through the window), the softness of blankets & pillows, the smell of fresh flowers, the way light dances on the ripples in a lake/pond/river, the company of good friends, closing my eyes after taking a bite of food and savouring the taste & texture. Volunteering also got me through a lot. I might not have always been in the best of shape, but I still had valuable skills and experiences to share with others. Often you don't realize just how powerful of an experience this can be for yourself & those you've worked with until many years later. It's also yet another area where you often realize there's worse things out there than what you're going through. Pets are great too! I'm always amazed at just how much they can sense and how they respond. They're always so comforting and concerned, especially when I'm sick. I swear they sometimes pick up on things my body does before I do.

Rissy2d's comments remind me of a quote. "When your favourite tool is a hammer, everything looks like a nail." The medical version of this is often, "Pick your specialist, pick your disease." A great classic example of this were the numerous GI doctors I saw with my GI malabsorbtion issues. ALL of them thought it had to be something structural and wanted to do (at a minimum) a colonoscopy. At most, some of the GI docs wanted to remove both the small & large intestine, confining me to a life of IV nutrition and a bag. Even with CD full of images showing no abnormalities, the GI docs refused to believe it. They all flat-out refused to test for bacterial sources. Not surprisingly (but scary) they couldn't tell me what the normal bacterial flora of the GI tract were supposed to be. Every non-GI doctor I presented to thought it was bacterial/fungal/viral in nature. It ended up being bacterial. The non-GI docs weren't entirely right on treatment either -- they all focused on prescription antibiotics and anti-fungals. None of them bothered to test to see which organisms were causing issues. So they'd kill off one group of bacteria only to have another flourish. Even an infectious disease Dr got caught up in this line of thinking. The ultimate solution ended up being removing the energy source (sulphur) from the bacteria using a 100+ year old remedy (Bismuth). Years of suffering, not to mention the expense of doctors + drugs + lost work time, were resolved by the 3rd day of a 10 day treatment of bismuth (~$20, ordered by my organic chem professor friend at a local Uni). All of these doctors had their preferred tools (GI:colonoscopy/surgery , GP/Internal Med: prescriptions, Infectious Disease: prescriptions) and that's what they relied on. It's not good medicine, but it's human nature. You'll even see this pattern with auto mechanics.

I haven't seen my cardiologist in years. Other than initial tests and dx (which were useful), there's not a great amount he's been able to do for me. Quite disappointing actually, as he really did have a good bedside manner and was willing to listen. Once I was aware of what signs & symptoms were normal vs. when I should be heading for the ER, I didn't see a need to go with his recommendations (pacemaker and/or implantable defib). He also missed that my heart's ejection fraction (how much blood it actually pumps with each stroke) was substantially low, suggesting deconditioning. My GPs (I have two, one for each city I spend a lot of time in) have been very helpful. If they don't know the answer, they're willing to dig deeper. They're also not condescending and understand that I do have some medical school training under my belt. I also acknowledge and understand the limitations of my knowledge vs. their years of experience. It's made for a great working relationship for all of us.

I know my dad's had 1-2 very minor strokes and that some of my extended family on my mother's side has had some severe strokes. In both cases, they had high blood pressure. My body doesn't seem to be anything like anyone else in my family's. They all struggle with high cholesterol, high blood sugar, high blood pressure, whereas all three of those are low for me. They're all generally Type A stressball personalities, I'm a relaxed Type B. At the same time, I'm not willing to discount genetics.

How many people here are in northern climates vs. southern/tropical climates? Home base for me is Florida, but work takes me to the northeast a bit. I used to absolutely struggle with the climate change, with it taking me 5-7 days before I wasn't freezing. Lately the first 24 hours are rough, but after that I seem to adjust reasonably well. I've also been debating taking a job up in the northeast and have been a bit worried what being in the cold climate full-time would be like.

I definitely notice this, especially in states where there are no car emissions inspections and I get behind a 'beater'. For some reason poorly-tuned gas cars seem to be worse for me than diesels.

It's funny Corina mentioned coloring, as that's sometimes what I'll do in Photoshop. I'll find an old B&W photo in the Library of Congress' archives and just start hand-coloring it in Photoshop. I've had a few that have turned out quite good. One of my friends actually had me make a poster of one for her.

There aren't any published studies showing a link. I'm just doing a very informal, very unscientific poll here to see if there might be anything to it since some of the symptoms are common. No reason for panic/alarm/worry here. Much of the POTS/DI world hasn't ever been studied. I'm just throwing an idea out there to see if there's any reason to bother with it. Association does not mean causation by any means. The problem with attempting to link symptoms is you can sometimes get some very interesting but very wrong conclusions. For example if you look at high-crime areas, there are usually more police present in those than low-crime areas. One could come to the conclusion that a high police presence causes crimes. Similarly-flawed logic has been unintentionally used in science numerous times. Just look at the studies linking high-fat diets to obesity (don't tell the French this), or the study which said children sleeping with nightlights were more likely to develop myopia (no, just more affluent families were likely to have night lights and more affluent families were more likely to encourage reading, which affects vision).