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Everything posted by bunny

  1. I feel much worse after a large draw, to the point that I'm passing out left & right. The draw itself doesn't bother me -- I've done my own draws before. It usually starts about 5-10 minutes after the draw and lasts 1-2 days afterwards, slowly getting better over those 1-2 days. Ugh. I hate the feeling. As a result, I don't get blood drawn often. I've been at this long enough to know what various things my body does correspond do what the labs will likely show.
  2. Add me to the "mornings suck' crowd. Typically, my blood pressure absolutely tanks while I'm sleeping (<80/45, pulse <45). When I wake up, my BP & pulse are still stuck in comatose mode and getting up just results in me passing out. It normally takes me about 1-2 hours before I'm ready to shower and head out the door. My body has a Jekyll & Hyde thing going on. I'm either feeling good or feeling pretty bad. Not much inbetween.
  3. I was dx'd with osteoporosis in my late teens. I've managed to improve to osteopenia. It's been 5 years since my last bone density scan so I'm hoping to do one sometime soon. I live in Florida, so getting vitamin D isn't all that difficult for me. I try to get a little sun at lunchtime a few days a week and naturally get some just being out and about on weekends. I try to eat "real" foods, ie: food which doesn't come from a box. Nothing special as far as diet, I just look at the way my grandparents lived and have tried to duplicate that. Both of them lived well into their 90s without meds. As one of my doctors pointed out, vitamins in nature don't come in pill form -- they come in food. He's leery of supplements and instead pushed me to eat more foods which contain those vitamins and other beneficial chemicals which science isn't aware of. Exercise-wise, nothing fancy here. Not even weights (hoping to change that soon). Just plenty of walking.
  4. Honestly? I don't drink anywhere near enough water. Go ahead, slap my hand now. I already know I should drink more. Remember that moisture in your food also counts as far as the body's concerned. It's not real concerned if the water is coming from water, meat, salad, etc. Thus, choosing foods with a higher moisture content over drier ones is a good idea, not to mention that these usually are healthier, less-processed foods to begin with. I do try to make sure I have cold water close-at-hand throughout the day, which helps a lot. I'm not a fan of room-temperature water. Having water which actually tastes good makes a huge difference. Also, beware of drinks which dehydrate you. Alcohol, sodas, and caffeine will dehydrate you. As much as they are enjoyable, they're best avoided if you can find the will to do so.
  5. Careful with doing a vegan diet, especially at your age. It's very difficult to get enough protein and nutrients on a pure vegan diet for an adult; it's even more difficult for a developing body. I was raised mostly vegetarian and by my late teens, I ultimately had to bring meat into my diet. I saw multiple nutritionists, even a vegetarian dietician, and she was the one who ultimately pushed me to eating meat after everything else failed. My health was deteriorating and my muscles weren't developing. Bringing meat into my diet resolved it.
  6. I'm a FL native and have noticed that my body does substantially better in northern climates. When I've been in NY/Ontario/Europe, between the extra walking and climate, I don't seem to struggle anywhere near as much as I do in Florida. Heat doesn't get me anywhere near as much as humidity does. For anyone living in a humid climate, I'd strongly suggest getting a dehumidifier, even if you already have air conditioning. I seem to feel best with indoor humidity < 45%. At my home, it's currently 78F inside, 43% humidity. Feels absolutely heavenly to me. I also found cities to be more favorable for me as well. Lots of walking opportunities throughout the day. So I'd be able to rack up a few miles in a day, but unlike in the suburban settings, it's a little at a time. In the suburbs, the only way for me to get the same amount of walking in is to go to the gym and try to bang it out in one or two visits a day.
  7. My recovery time is typical when i get sick, but when my immune system is fighting something off, even if I don't feel sick, it absolutely drains me. As I type this, my fiance has the flu, and I've spent a few days with her, even accidentally kissed out of habit. No symptoms for me, but dizziness and fainting episodes are worse. The biggest thing I notice is my sleep requirements skyrocket from the normal 4-5 hours I get to 10-16. Knock on wood, I haven't been sick in 5 years, but there's a reason for that (currently doing research to see if this will work in a broader population), but there have been plenty of times where my immune system is using just about all of my energy to keep it that way.
  8. My cardio's always pushed standing and walking (as much as I can tolerate) and I can tell when I have been doing a lot of this vs. when I've been sedentary and sitting a lot. Also, I've found that eating healthy, real food (ie: doesn't come in a box), cutting back on my sugar intake and getting processed foods out of my diet is helpful too. I notice a substantial improvement when I'm abroad where food isn't loaded with all sorts of junk.
  9. +1 on having a doctor take a look at that. I do pass out frequently, but usually I'm only out for under a minute. Sometimes I'll be out, wake up feeling very drowsy, roll over and go to sleep, but never straight out for more than a few minutes.
  10. I had severe anorexia in my teenage years (BMI of 10). I did quite a bit of damage to much of my body, including my brain, heart, and bones. There is no doubt that my dysautonomia symptoms are 100% caused by this. I remember my first ER & hospital stay where the doctor was looking at my vitals, looking at me, and was floored that I was alive, let alone conscious and talking with him. He said usually patients die before they get that low. He very wisely told me that from that point forward, I might as well throw out the medical textbooks, as my body was ignoring all of them and will never work the same again. That's probably the best medical advice I've ever been given. Symptom-wise, there was plenty of dizziness and such when I was restricting. However, gaining weight has always been the hardest on my body. Refeeding absolutely would wipe me out. The nurses would take advantage of this, hiking up my feeding tube rate in the evening and I'd get dizzy, drowsy, and sleep/pass out shortly thereafter. In the morning they'd throttle it back to almost nothing and I'd wake up a little while later. With me unconscious, I wasn't burning through calories anywhere near as fast, so they were able to put more weight on without pushing my intake into dangerous territory. Even though I've been at a normal weight for over a decade, the damage has been done. My bones no longer qualify for osteoporosis, but I'm still well into the osteopenia category. My brain functions better than it did when I was restricting, but there is still serious damage and deficits caused by the starvation. My circulatory symptoms are worse now than they were then. My heart's ejection fraction was low back when I was at a low weight. Now it's being asked to supply blood to 2x the mass of body that it was then, so there's no surprise that I'm frequently dizzy, tire easily, and pass out. When my immune system is actively fighting something off, I'm wiped out. There isn't much energy reserve left in me. The discussion as of late is that they want me to drop ~10% of my weight in hopes of improving this mismatch. For better & worse, I fully recovered many years ago, so I can't harness anorexia to help out with the weight loss. I don't even have the mindset anymore. Losing weight with a traditional mindset is rather difficult, and quite frustrating for someone who could drop multiple lbs in a week. I have a lot of sympathy for my fiancé who is trying to lose weight. I also find that it takes already-damaged parts of my body longer than normal to heal. Last month I managed to give myself my first concussion when I whacked my head hard into the side of a metal beam while walking and carrying a box. It took 4 weeks for the symptoms of that to go away. The irony is that I often have to wear a helmet due to my dizziness and syncope, but my first concussion wasn't caused by my dysautonomia, nor was I wearing my helmet. (searching the forum for info on dysautonomia and concussions is how I found this thread) However, there have been fringe benefits from all of this. I've twice had rounds of GI issues. One was a bacterial overgrowth of the small intestine, the other was C.Diff. My body has acclimated to starvation, so I fared far better with it than a normal healthy person would have. My body kicked into its low energy mode and I wasn't losing weight anywhere near as fast as expected, which bought me time to find solutions.
  11. I just noticed this the other day. Not sure if it'll be the same for others, but it's worth a shot. I was feeling dizzy in the shower the other day and rested my elbow against the wall and kept it there for the rest of the shower. While doing this didn't making the dizziness go away, it was a huge benefit to my balance. Having that physical point of reference for my body helped a lot.
  12. THIS is what I was thinking of when I read the original post. I've never passed out from thinking too much, but it does tire me out quickly. It made life in college & grad school quite difficult at times, but I managed to get through it.
  13. My HR always goes higher when my immune system is fighting something off. My resting HR is usually ~45-55bpm, or ~32-45bpm when sleeping. When I'm sick add ~30-50 points to that. Often, the HR goes up before I become symptomatic of a cold/flu and remains after the cold/flu symptoms go away.
  14. I was hoping someone with your specific type of POTS would have responded, but in lieu of that, I'll post my experiences. I'm dx'd with NCS/NMH, and generally hypo across the board. I do travel quite a bit, so I've seen my fair share of air travel. Overall, the airport experience is usually worse for me than the actual flight. Notably, long security & immigration queues can be quite taxing on my body. I just did a 9+ hour flight and wasn't overly symptomatic in flight, even with some champagne and wine in the flight. A few things to think about: 1) Newer planes have better environmental and pressurization systems. They also tend to be quieter. Also, beware of rear-engine aircraft, like the CRJs, MD-80/90, and Boeing 717. Nothing wrong with them UNLESS you're sitting in the back of the aircraft, at which point the noise levels are unbearable. Sitting closer to the pointy end of the plane can make for a very quiet flight. 2) Find ways to avoid lines. Flying at off-peak times can mean the difference between waiting 1 hour vs. 30 seconds in the queues. You can also arrive early to avoid the rush. I tend to arrive at the airport at off-peak times and will camp out in the lounge for awhile. It's also much less stressful. Also, some airports have multiple security points, with some entrances being busier than others. No use waiting if you don't have to. 3) Avoid alcohol & soft drinks on the ground AND in flight. They will dehydrate you. Likewise, fresh foods vs. processed junk should be easier on you. 4) Make sure you're well-rested, or about to collapse. I use both techniques depending on the flight. Well-rested means fewer symptoms at the departure airport, but I'll be awake for the entire flight. Dead tired means I'll be rubbish in the airport but will (hopefully) be able to sleep on the plane so I'll be in good shape upon landing. 5) Airlines/airports do have wheelchairs. I'm too stubborn to use them, but they have them available. Some people will try to game the system and use these to try to get through security / get on the plane first, so don't be surprised if you get push-back from staff if you don't look disabled.
  15. I do get chair massages (with massage therapist, not the Brookstone type chairs) and haven't ever experienced this when they're doing scalp and head massages. I've just noticed it with car seats, dentist chairs, and laying flat in bed without a pillow. With my latest car, I had them put in heavily padded headrests with extra side support, and so far so good. Kim: I'm hesitant to get doctors involved again. Many bad experiences with them, especially with them making things much worse. For now, my body is still symptomatic but it's stable so I know what to expect and can work around it. I was hoping someone else might have already come across this and had some insight.
  16. I'm curious if anyone else has experienced this, or if anyone has an idea why this happens. So, if I have pressure put on the occipital part of my head, I get a strong feeling of dizziness, sometimes light nausea. I've had this happen when sitting upright in newer cars where the head restraints are pushing against the back of my head and I've also noticed it when I'm laying down flat and the weight of my head is focused on the occipital region such as a dentist chair or laying flat on a bed. If I'm able to spread out the pressure across more of the head, the sensation goes away. I've been thinking about this one for awhile and can't seem to come up with an explanation.
  17. Saline replacement certainly would help speed up your recovery time. It was suggested to me to increase my fluid intake well beforehand, which was only marginally helpful.
  18. +1 on the cooler water. It's not a cure-all, but it certainly buys me more time. I also find a handheld showerhead makes life easier as well.
  19. I've mostly cut out sodas and other sugary/processed drinks from my diet and noticed a big improvement in overall hydration levels. The interesting part is that since I did this, I'm drinking fewer drinks, BUT my body's overall hydration level seems to be higher. My guess is that it's the excess sugar & salt in processed drinks that was causing my body to crave more drinks (salt) and yet need to urinate more often (sugar).
  20. I've had this happen to me before and I'm definitely NOT squeamish about needles -- I've done my own draws before. It's been awhile since I've had blood draw, so I don't recall how many vials it was. BUT I was fine for the draw, fine after the draw. It's when I got up from the phlebotomy chair and started walking for the door that I passed out. I remember the staff at the lab befuddled as I went through the draw itself fine. I knew it was hypovolemia, but they couldn't understand why a health-looking 20-something would have this. I was useless for the rest of the day and still felt rough for the next day or two. As far as subsequent blood draws, I've generally avoided them. It's been almost 4 years exactly since my last blood draw, and we only pulled 3 tubes for that one. There's never been anything remarkable in any of my results for the past ~10 or so years other than false positives. We already know what's wrong with my body (NCS/NMH, hypovolemia) and BP/pulse/ECG/SPO2 have been far more telling with how I'm doing.
  21. I drive ~30,000-50,000 miles (50,000km-80,000km) a year, mostly for work. I look at it this way: Let's assume I'm fully healthy. There will still be times I'm not fit to drive, such as having the flu or being drunk. Everyone at some point has been sick, many have been drunk. Does that mean they should hand in their licenses? No, then practically no one would have a license. I know a few commercial airline pilots and every single one of them likes to drink and has the stories to prove it. BUT they're not afraid to call in if they're not feeling up to duty. So, I drive and keep an eye on myself. If I'm not feeling well, I don't drive. If I start to feel weak while driving, I pull over. When I bought my most recent car, I kept my medical issues in mind, so I upgraded the sound insulation & glass to reduce fatigue caused by noise, upgraded the driver's seat for better adjustability, and semi-autonomous driving systems. The upgrades weren't cheap, but it makes a world of difference. When I can drive for 2-3 hours and feel refreshed vs. looking for the nearest flat surface to nap on or having to pull over mid-trip, I'd say it works! Re: driver's license... my own doctor said you never want to get into a pi**ing match with the DMV over your health. Say as little as possible to the DMV and keep the license. If you're not fit to drive, don't drive. If you don't trust yourself, give the license over to a friend. Some states are worse than others when it comes to reinstating licenses.
  22. Humidity's my nemesis... I was at a friend's house last weekend and they had all of their windows open and aircon shut off. It was probably only 78F/25.5C inside but humidity was thick. My pulse was running ~80-95 BPM just sitting whereas I normally run ~45-55 bpm sitting. I've walked into stores/restaurants whose AC is obviously malfunctioning where the temperature might be alright but humidity is high and I'll have to walk right back out of them because I know I'll become symptomatic quickly. Likewise, the aircon at where I'm staying this week isn't working (repair guy coming this afternoon). It was 82F/28C inside last night, but there's a dehumidifier here, so as long as I was in front of a fan I felt fine. The old-timers in Florida would always say "It's not the heat, but the humidity that gets you," and I do believe they are correct.
  23. Try using a barstool. It doesn't make the cooking any easier, but might be able to give you a bit more time before you feel symptomatic. I also try to sit as much as possible between cooking tasks. +1 on the rice cooker! I have an American-style one, so there's a steamer basket above the rice. Iv'e become quite adept at finding ways to shove almost everything in there and letting it go. Likewise, I'll often prep the rice at night and have it be ready in time for breakfast / lunch. I also use a crock pot quite a bit, as I'm very much into soups & salads with fresh bread, which leads to... a breadmaker. Never buy one of these new -- your local thrift shops probably have dozens of them. I guess this is one of those items people request/get for a wedding and never use. I picked up a Zojirushi breadmaker on a whim one day from the thrift shop. It had never been used and still had everything wrapped in plastic. $15 for a $200 breadmaker? I figured I'd buy it, play with it, then put it up on eBay. Well, I never stopped playing with it! Waking up to fresh bread in the morning is awesome and it only takes about 10 minutes of prep time. I also do as much prep as I can ahead of time. Even if it's doing it an hour or so beforehand, it reduces how long you have to stand while cooking. I like Urkittenme's suggestion of cutting up veggies at the couch.
  24. Resting / Sitting: 36-70* Avg normal ~53 Standing: 84-110 Walking: 100-130 Intentional exercise: 125-175 *I feel best between 45-60; resting pulse does sometimes go ~70-90 but usually indicates my body's struggling, like last weekend when I was at a friend's house where humidity was thick and AC was off and I thought I was going to pass out.
  25. I have the Charge 2 and have found it helpful, but with limitations. First and foremost, it's designed to be an activity tracker / step counter. This, it does very well. Similarly, it's sleep tracking feature is very good. I have a messed-up sleep schedule (~7pm-12am, 3am-8am lately) and it has no trouble tracking that. Even when I sleep for 12 hours like I did on Saturday, or take a 3 hour siesta mid-afternoon, it figured it out. For heart rate, it's good, provided that you're looking for average heart rate. The website only shows you pulse in 5-minute intervals. It's NOT good for a rapidly-changing pulse, like I experience. The watch itself does update faster than 5-minute intervals, BUT there's still a pretty significant averaging algorithm going on that causes it to miss some of my events, or show only 1-5 bpm increase when I'm measuring 20+ bpm increase. I think the watch's sensors are probably seeing the difference, but the software is discarding the data as bad data since no normal heart would act like that. Additionally, the logging feature doesn't let you export the pulse data. On the positive side, it seems to be happy to read low heart rates -- it showed my resting pulse correctly at 36 bpm, which is impressive. Most consumer-grade blood pressure cuffs won't show a pulse this low, nor will some of the professional ones. As I said, I do find it very helpful and wear it 24/7. It allows me to see trends and keep track of dysautonomia events and match them up with what I was doing, eating, etc. My SO has found it to be really useful. I loaded the app on her phone so she's able to keep an eye on how I'm doing and do so discretely. If I'm within ~30 feet of her phone, the app will automatically connect to the FitBit and stream live data to the phone. If I'm out of range, it shows historical data up to the last sync, which I believe we have set for every 30 minutes. So, if we're out at a restaurant and she wants to know how I'm doing, she just pulls up the app and there's the data, without having to carry a pulse-ox or BP cuff. For that matter, I don't even know when she's checking up on me, which isn't a bad thing. I'm still somewhat in denial of my condition, so my "I'm feeling alright" is sometimes challenged with, "that's not what the FitBit says." As an aside, when I had a slight sore throat / cold awhile back, it showed on the FitBit with an elevated resting pulse for the 2 days it was happening. When we looked at the historical data, my pulse started to rise before I even felt the symptoms. Kinda neat.
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