bunny

Add one more "me too" to the list. Though mine's variable. Inclines/stairs/carrying things up stairs really takes a nice hit on my stamina. When I'm feeling really POTSy, my endurance level is minimal. When I'm feeling good, I can walk 10+ miles in a day and not feel it.

At my worst, my BMI was down to 11. Anorexia has a way of doing that. BMI's up to 17 now and that's about as high as it will probably get. When my weight gets higher than this, my body seems to struggle to function and the POTS symptoms get much worse. Same when BMI gets too low, but slightly different symptoms

City water. Nasty, hard, lime-filled water. With copious amounts of chlorine (yuck!).

I live in the suburbs but find my body runs better when I'm in a real "world" city. Somewhere I can get plenty of fresh food and plenty of exercise throughout the day from walking/stairs/etc.

Any day I wake up and am alive and not in the hospital is a good day to me! My body's been put through so much and despite what the medical textbooks say, I'm still alive and functioning. Because the symptoms are so transient for me, even when things are rough there will be good moments in the day.

The severity of my symptoms varies substantially. There's the daily variation and the longer-term variations. I'm usually worst when I first wake up for about an hour or so. Usually fine throughout the day, sometimes a 3pm dip, and clear until the night. Heavy meals affect me most at night. Also, how tired I am affects it greatly. Long-term, sleep + exercise + processed foods seem to be the important factors. Also add in sickness, as any decent cold/flu/etc can make my symptoms come on full strength all day long. There's a lag between getting over the cold/flu and the POTS/OH getting better.

I'll sometimes wake up in the middle of the night or morning with this as well. I've always written it off as a circulation issue. I don't have a lot of body fat and had a firmer mattress at the time. I've also had occasional temporary paralysis of a leg accompanying the numbness. Only happened twice in the past 10 years, but scared me. No cause ever found on those. Full feeling and function came back on the leg after being up for a new minutes.

Anyone have any research on the effects of long-term low O2 sat / low bp on the brain? Logic says it's not good, but does anyone have anything concrete to back up the suspicions?

Sadly, that's not the most illogical statements I've heard a doctor make. That's akin to saying driving without seat belts would make us more cautious drivers or intentionally hanging around people with the flu because I had a flu shot. I find that I take fewer risks with the helmet on, as it reminds me that I do have a medical condition and need to be careful. For me, half the battle is getting myself to accept that I'm sick and try to convince myself that I am indeed not feeling well. Difficult to ignore when I have a helmet on my head. I'd say you should get a helmet, especially with all of the damage you've already sustained. It's not like you have a major conscious choice to faint or not.

Technically, there is no safe number of concussions. Fwiw, increased agitation/anger is often the sign of a head injury. I'd suggest you highly consider a helmet. Concussions are caused by blunt trauma to the brain itself when it bounces off the inside of the skull. As you're probably aware, each successive concussion you have makes you more susceptible to concussions. This "glass jaw" phenomenon is readily seen in boxers and pro football players. It'll take less and less of an impact to trigger a concussion. There is no magic number. You don't suddenly hit 10 concussions and turn into a vegetable. Instead, each concussion creates cumulative damage. It'll also be different for every person as well. In my case, my brain's actually shrank a bit from the anorexia, so there's a larger gap between my brain and skull, which means my brain can rattle around far easier than a normal person. I started wearing a skateboard helmet (the kind with the soft squishy pads) when my POTS got really bad from the refeeding process of anorexia recovery, primarily after eating and when I first woke up. I did alright with that until one day I chipped a front tooth after passing out in the shower. So...with the persistent nagging of friends, I got a full coverage hockey helmet w/face mask. I really dislike it, particularly the feeling of the chin cup but can't deny its kept me out of the ER and concussion-free. I "graduated" last year to a double layer karate/martial arts soft helmet. http://www.karatedepot.com/pr-hd-03.html . I'm not passing out as often and aren't randomly passing out, so I don't need the facial coverage. This helmet's MUCH better on just about everything. First, its better for concussions than a hockey helmet. It was specifically designed to prevent concussions from falls, not a 10mph collision from falling off a bike or getting hit with a 90mph hockey puck. Its nearly 2" thick at the forehead, temples/sides, and back of the head and its soft, meaning it'll almost fully compress and slow down the impact for minor bumps (like hitting your head on a table, shower, etc) whereas a bike or hockey helmet are designed for catastrophic hits and won't compress much in a minor hit. There's a huge difference in the way bumping my head feels in the karate helmet compared to the hockey helmet. I still felt the hits with the hockey helmet. With the karate helmet I don't even feel it when I bump my head. Keep in mind that the goal of a helmet is to slow down how fast your brain goes from in motion to zero mph. The speed of this deacceleration is the difference between setting your head gently on the floor vs slamming it. The more space you can put between your head and whatever its hitting and the more the helmet compressed, the lower the peak forces you're hitting your head with. Second, it's soft so it conforms to the shape of my head. The difference in comfort is night-and-day. I actually don't mind wearing this one for extended periods of time. Wore it for 48+ hours straight a few months back when I had the flu and had it coming out of both ends and was completely dizzy/stumbling around. I didn't even notice that I was wearing it until one of my friends came over with soup and thanked me for wearing it. Third, It covers more of my head than the hockey helmet. Since it covers the ears and part of the jaw, it doesn't put my neck at a strange angle if I fall asleep with it on. I'm a side sleeper and I just use a thin pillow. At this point I actually sleep better with it on. Its more comfortable than the pillow alone. Oh, also the chin strap is elastic, so talking/eating aren't an issue. it also covers most of the cheeks so I'm not needing the mask. They do have masks and models with chin pads if needed. Fourth, I'm not as embarrassed to wear it. It actually looks decent. Let's be honest, many of you reading this post know you've hit your head before from your dysautonomia. You know a helmet probably would be a good idea but are too embarrassed to do it. When my dr suggested an epilepsy helmet, all I could think about were the kids in school who rode the "short bus". Those institutional helmets look terrible, aren't comfortable (only Charlie Brown has a head shaped like those helmets), and they don't have anywhere near the padding my karate helmet has nor are they tested to any standard. I talked with a local neuro and he actually recommends these helmets over the medical ones for his epileptic patients with drop seizures. I'm still not thrilled to go out in public with it, but don't mind it around my friends. I bought mine locally from a karate supply shop for $30. Beware of the size chart at KarateDepot.com -- Its not right. The manufacturer's chart is here: http://macho.com/docpages.aspx?pagename=CUST-SERV-SIZE-SPAR You actually want it to fit very snug so it doesn't move around which is annoying and can be dangerous if it slips and exposes your forehead when you fall. I tried an XL initially but it was annoying and kept moving around. The L felt tight initially (especially when you're not used to wearing it) but now I actually don't notice it at all. I say go for it! Get a helmet before you inflict more damage upon your brain that could have easily been prevented. And that's not just for jenglynn, but anyone reading this thread who faints and has hit their head. Seriously, don't let your emotional discomfort and embarrassment get in the way of protecting your brain! Brain damage is mostly irreversible. Even if you just wear the helmet when you're home alone (isn't that when we're usually at the most risk anyway?), it'll make a difference. Alyssa, you might want to try this helmet as well. As you can tell, I'm quite pleased with mine.

My symptoms' intensity and duration does vary. Lately the worst seems to be after eating a heavy meal. I do start to get presyncopal symptoms if I'm sitting still for a great length. Fortunately driving has enough activity to keep me awake, but if I'm just sitting as a passenger, especially after eating, I'll definitely start seeing symptoms.

Don't forget about sunlight. The body naturally makes vitamin D in response to sunlight exposure. When I'm having a rough patch, its sometimes difficult to drag my butt out of bed let alone outside but I usually feel better afterwards.

Large, heavy meals will hit me every time. About 20 mind after eating a heavy meal and I'm looking for a place to lay down for awhile. While its been ages since I've had one, Ensure Plus hits me the hardest out of anything. There were times I wouldn't be able to make it through an entire can of that stuff before passing out. So I try to graze on fresh foods, predominantly fruit and veg, rather than large meals. By no means a vegetarian though.

As long as I can keep walking, as opposed to standing still, I'm usually alright. Usually being the key word. If I'm having a rough time, I'll sit as much as possible and increase fluid/salt intake. I do much better at a job where I'm only sitting still for a little bit and walking around inbetween. Getting enough sleep and eating fresh foods makes a big difference for me.

In just about everyone*, bp dips at night when you sleep. Mine also dips well into the 70s/30s territory at night. I know I'm very difficult to wake, and from my hospital charts + bp monitoring, I've assumed it was due to low bp/lack of perfusion to my brain. I also can fully sympathise with having a rough time when waking up and for a little while after. Getting up in the middle of the night is hit or miss. I also sometimes will wake up and pass out immediately when I try to sit up. As a result, I put my helmet on before I go to bed (if I'm not already wearing it because I'm dizzy or exhausted) and don't usually take it off until a little while after I shower. According to my doctors, my brain shrunk from my hardcore anorexic days, so there's more fluid space than there should be, and I'm at a much higher risk of concussions/dain bramage from head impacts. I've already had enough dain bramage and can't afford more. Uncomfortable at times, but so far it has been effective -- no concussions. *The only exception I'm aware of are severely anorexic patients. I'd assume their bp and hr are just barely adequate for life, thus the body doesn't even try to go lower.

I get chest pain occasionally and haven't been able to find a cause for it. I've gone to the ER numerous times and they're never able to find anything. It will come on out of nowhere and stay for a few minutes to over an hour. The pain itself can be quite bad, enough to stop whatever I'm doing. The only slight correlation is that it generally happens later in the day and at night. Wish I could pin down more factors bit they have been elusive.

Mine still resets, some 20+ years and counting.

Sadly, I've never found the ER helpful for anything but a bag of saline and that's if I can get to see them. I went twice when my heart was doing some very unusual things but at the end of thousands of dollars of testing, nothing found. The one time my heart was making an audible click which you could hear from about 4 feet away. They even asked me when I had an artificial heart implanted and who was the surgeon because they couldn't find a scar. Only problem -- this was my real flesh & blood heart doing this. Nothing ever found. ER wait times are 6-12 hours on a good day here. ER staff varies widely from unknowledgeable and cruel to having a clue and apathetic, but never competent & caring. Sadly, I'm better off riding it out unless there's obvious signs of something major (heart attack/stroke).

If you have NCS/POTS, having a tilt table test feels like you're dying from bleeding out of your body. Essentially, that's what the brain's picture of things is. The body gets put upright, is strapped down tight to the table so you can't do any of the subconscious counter-measures to bring your BP back up (like fidgeting, alternating weight from leg to leg, tense muscles, etc.). When tilted upright (and if you do have NCS/POTS), you'll feel the blood pooling in your lower limbs (hands, legs/feet). Then you'll start to feel the heaviness of this. Then you'll start to feel numbness in various parts of your body as they're being deprived of oxygen as all of the blood is pooling rather than circulating. You'll definitely be dizzy as **** by this point because your brain isn't getting oxygen either. My heart tried desperately to get blood where I needed it and went flying well into the 180-200 bpm range. At the same time it feels like you're suffocating (because you are!) and you're gasping for air. Don't forget the nausea. There's a reason they tell you not to eat/drink anything before this test -- it stands a good chance of coming up. If you're lucky, you pass out quickly. I think symptoms started after 3-4 minutes. I went into full asystole (heart stopped entirely) after 6 mins 48 seconds. Apparently a new record for the cardiologist's office. I was in asystole for a good 15-20 seconds before my heart started to sputter and beat like nothing ever happened. Physically, I felt exhausted and dizzy, fortunately no nausea after passing out though. Actually, let me rephrase that. If you're lucky, you don't feel any symptoms and are just bored out of your mind whilst strapped uncomfortably to a table in a near-standing position for 20-40 minutes and wonder what the purpose of this crazy test is. As far as how being in a wheelchair would affect this, I don't think it would make much of an impact. For those of us who are still ambulatory, we subconsciously use our leg and arm muscles to help circulation. I didn't realize how much fidgeting I did until I was strapped to the table and my body was trying to do anything it could to bring my blood pressure back up. When they do the test (at least mine), I was strapped down tight enough that I didn't have the benefit of being able to use my leg muscles nor move my arms around to counteract the blood pooling.

Mine definitely "resets" after I pass out. I usually try to fight off passing out as I don't care to be unconscious nor do I like the feelings I get right before I pass out. BUT sometimes it's just prolonging the suffering. I'll sometimes have this happen with friends and they'll get me to some place safe (where I can lay down or recline, or otherwise fall/hit my head) and tell me to just pass out. Other than feeling tired, I usually feel quite good after passing out. I wouldn't use the word refreshed, but maybe 10-15 mins afterwards I do feel ready to take on the world again. My body seems to be more stable afterwards as well.

For me it usually follows a pattern: slight dizziness -> lightheaded -> increasing dizziness -> eyes start having trouble with focusing -> very dizzy -> lose colour vision / get tunnel-vision -> consciousness and balance starts to go -> nausea -> out. I've been lucky enough that I get plenty of warning from my body before I pass out. Most of the time I can halt it before I get to the difficulty focusing/very dizzy stage. There's also a second pattern my body has which usually is when I'm sick/tired/after eating, which goes like this: slight dizziness+weak -> lightheaded+increasing weakness -> increasing dizziness -> eyes start having trouble with focusing + start to have trouble keeping my head up and my limbs feel like lead weights -> consciousness starts to go -> out. This second pattern is more difficult for me to override.

I've been fired by three Drs myself. The first was a cardiologist. After a battery of tests including a very positive tilt test, he wanted to do an implanted defib / pacemaker. I refused as I didn't see my symptoms as being that bad, and most of the medical literature I read said asystole due to this hadn't caused any known deaths. I also work around high voltages and high levels of radio frequency energy and the last thing I needed was my heart artificially thumping away to the beats of Rump Shaker as I'm working on the transmitters. Its too bad actually, as this Dr had one of the best bedside manners I've encountered. When I threw up during the tilt table test, he was the one wiping off my face and arm, even though there was a patient tech in the room. The second was a GP who was furious that I refused to let a GI doc disembowel (GI wanted to remove both my large and small intestines) and even more upset that I was looking for a different GI doc. She did this via certified letter, which only made my own family angry with me. The third was a GI who was perplexed by my symptoms and insisted that there was either a cancer or structural problem with my intestinal tract despite CT scans showing absolutely nothing wrong. Did I mention this Dr had a brand new office and a brand new surgery center attached to it? He wanted to do an endoscopy, a colonoscopy, and exploratory abdominal surgery, all to be done on the same day. Did I mention this Dr had a brand new office and a brand new surgery center attached to it? I was losing about .5 lbs a day and felt like death warmed over and my vitals showed it. Bp was something like 82/52, pulse was near 40. I was getting annoyed with his insistence, so I challenged him - bring his anesthesiologist in and see if he was willing to put me under. Did I mention this Dr had a brand new office and a brand new surgery center attached to it? After waiting for awhile, the gas man shows up with the Dr, takes an automated bp reading, then breaks out a stethescope and manual cuff and takes a reading. He then asked me about my weight loss since the GI problems started happening. He then looks at the GI Dr and says there's no way he would even consider putting me under let alone do that many procedures at once with the state I was in. As the nurse walked me out, she saw the post-it note on the outside of my chart referring me to one of the major teaching hospitals in the state, some 4+ hours away. She point-blank asked me if it was because he couldn't do a procedure on me here. She continued to say it was because I wasn't going to be a profitable enough patient for him. I was dumbstruck by her bluntness but it became apparent why she was being so honest. She had already put in her 2 weeks notice and was sick of seeing the Dr perform unnecessary procedures. Where do I stand today? No pacemakers nor defib, and my GI tract runs fine, without surgery. Not on any meds either. Scares me to think where I'd be if I went along with the doctors' advice. I'd likely be dead. You can only live on TPN for so long, and I can think of far more enjoyable ways to die from liver failure rather than TPN. So, like kayjay suggested, a doctor firing you may very well be the best help (and best for your health).

Part of my POTS is my fault -- I know I don't get enough sleep during the week, which aggrevates my symptoms. Getting only 3-4 hours of sleep a night on the weekdays due to work and family, but will sleep up to 12 hours a night on the weekends when no one bothers me other than attempting to ring me (don't bother, I shut my phone off now on the weekends when sleeping). Irregardless of how many hours I sleep, I generally have a very difficult time waking up. I won't even hear the alarm clock and depend upon light to wake me. Sometimes when I do wake up, my bp is so low that trying to sit up or get out of the bed is out of the question. It feels like I'm drugged. Often I'll sit up only to pass right out there in bed. This can go on a couple of times before I'm finally up. I'm still unstable and in a fog for awhile before I'm awake. I haven't seen anyone mention this yet, but sometimes I'll wake up in the middle of the night with terrible chills. Nothing I do can fix it other than an external heat source and it's not always because its cold in the room, although I do get cold easily. Not sure what causes this but I'd love to never feel it again. If I'm lucky I'll only be awake for 5-10 minutes and pass out. If its bad I'll feel like this for an hour or so and by that time my body will stabilize. I do get night sweats on occasion but never traced out their cause. I do know that my bp drops waaaay low at night when I'm sleeping. This is actually the POTS issue ive been trying to figure out as of late. Off the top of my head, I remember that I dropped down to 78/35, MAP 49 pulse 46 last week. I know that its normal for bp and pulse to drop when sleeping, but if wondering how low is too low and shay are the long term effects of this. The last thing I need is more brain damage at this point. General medical wisdom appears to be focused on high bp and very little is mentioned about the low end. Some doctors I've seen don't seem to think there is anything such as "too low", but I don't believe it. As an aside, my messed up body has its benefits. If I need to get some sleep I just lay down on my back (lowers pulse), fire up the electric blanket (lowers bp) and I pass out into slumber quite quickly. Almost always fall asleep in under 10 minutes. Under 5 minutes if I'm feeling exhausted/having one of my energy lows. Under 30 seconds if I'm having one of my bp/dizzy spells.

Weight definitely makes a difference for me, although I'm the opposite of Allene. 125-140 lbs seems to be the sweet spot for my body. Below or above that and the symptoms really start to dominate my life. Losing weight doesn't seem to cause anywhere near the problems that gaining does for me. Even that weight range plants me firmly in the underweight category for my height (6'2"), it's where I feel my best and my body seems happiest.

Make sure the electrodes stay moisturized, otherwise you will get some very strange readings. They make a special gels tor this such as: http://www.amazon.com/Buh-Bump-2-5-Ounce-Heart-Monitor-Electrode/dp/B000HZD2NU/ref=sr_1_2?ie=UTF8&qid=1327172152&sr=8-2 For people using these for exercise, this isn't normally an issue as their perspiration will take care of this. Also, keep in mind that most consumer equipment (bp and hrm ) will have trouble with arrythmias. Even many clinical devices don't handle arrythmias well. Keep this in mind if you have one.