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bunny

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  1. In the overall scheme of things, it was a bargain. All of the enhancements done to the car were by the manufacturer and no "medical devices" were used. It seems like once you stamp something as "medical" the price automatically triples. The options/modifications related to the drive systems & seats added about $2,500 to the price of car. I did get other options such as the glass dashboard & heads-up display, BUT those are admittedly superfluous. Considering that in the USA: a 2-week course of Dificid pills for C.Diff goes for ~$4,000, custom wheelchairs easily exceed $2,000, MRIs are $500-$1,500, and even my medical helmet was just under $400 ... I'd dare say it's cheap.
  2. There's a lot of technology out there which is just starting to trickle into cars. Because of the ways cars are designed, the tech in them is usually a good 5 years behind the consumer electronics market. Sometimes up to 10 years behind. Here's just a few things I mentioned in my earlier post: Here the car is judging my attention/driving performance. In this case I'm wide awake and feeling good. If it thinks I'm tired/out of it, the car will suggest that I should pull over and take a rest. Other things displayed: Green steering wheel = car is driving and steering for me. Speed limit sign = last speed limit sign the car's cameras have seen & read. It also sends this data to nearby, similarly-equipped cars via 4G. Green car + speedometer = Car is controlling throttle & brakes and will do a maximum of 70 mph, as set by the cameras reading the speed limit signs. If the speed limit changes, it'll automatically adjust accordingly. Likewise, it'll slow down/stop to match traffic around me. Officially, this is a "driving assist" system, but the car's systems are designed for full autonomous driving. Here the car's performing an attention check on me because it's not happy about my driving. If I don't react by tapping a button on the steering wheel or actively steer, it'll turn off the stereo and start demanding that I interact with the car. If I fail to respond appropriately, it'll then start the shutdown sequence, slowing the car down, pulling over, and calling for help. The interesting parts of the seats are mostly invisible and looks normal. The headrest changes from factory are well-integrated, but still visible. The photos don't really show how deep the curve is, but the sides go forward to my ears and holds my head still. The extra padding is there for comfort & safety. This car really does help me. It's been an absolute blessing. All of the advanced features keep me safe first and foremost, but they also make driving easier which allows me to drive for longer distances before I need to take a rest.
  3. A lot of my work involves travel, so this is something I'm very familiar with. I normally have a small wrist BP cuff & SPO2 meter in my carry-on and have seen that both my BP & SPO2 drop in-flight, especially on the longer flights. As others have mentioned, staying hydrated is a challenge in-flight as well. Unfortunately, the bubbly & booze the airlines serve isn't conducive to staying hydrated, no matter how enjoyable it might be. I try to balance it with copious amounts of water if I partake. Like Issie, I also carry a water bottle with me. Most restaurants / airline lounges past security have no problem filling it with ice & water for you. I've found it easier to get this accomplished on the ground than in-flight, especially on short-haul US flights. Water-loading in advance & overdoing it a bit when I've reached my final destination does help.
  4. I'm fortunate enough to have a custom-built car, with my body's limitations in mind. If it thinks I'm in trouble or if it senses I've passed out it will take over, try to wake me and if that fails, it puts on the hazard lights, pulls off the road, and calls my fiancé. I'm good about not driving if I'm not feeling well, so we've fortunately not had to use the system. We did a simulated test and it did what was promised. I also have custom-built front seats. They have ~25-30 or so inflatable air pockets in them which turn the ordinary-looking seat into a tight-fitting orthopedic seat with laterals and the headrest also has extra padding and laterals as well. It's in both front seats so if my fiancé is driving, I'm still protected in the passenger's seat, even if I pass out. The seats look normal minus the headrests when the car's off. Much less embarrassing and more convenient than wearing a 5-point harness. If for some reason I'm in an accident, the car uses all of these as an air cushion/airbag to protect my weak bones & spine.
  5. Keep in mind that many "normal" people have reactions to the flu shot. My SO (normal health) got the flu shot in '17 and it knocked her on her butt for about a week. I generally have a very good immune system, BUT, it's very energy intensive and drains me when it engages. This of course makes me more symptomatic. On the flu shot, I don't get them. Why? I'll let the CDC's own studies speak for themselves: https://www.cdc.gov/flu/professionals/vaccination/effectiveness-studies.htm
  6. I had to do a fecal transplant about 5 years ago due to a resistant C.Diff infection that wouldn't go away. The procedure is very similar what they do for a colonoscopy. Prep was Mag Citrate which wasn't pleasant. Dr prescribed 1/2 the normal dosage and it still was rugged. I would have paid good money for an "UNDO" button. I drove myself to the hospital with a towel on the seat out of fear. Of note: bootie burn, which I figured out was caused by stomach bile. Washing down there after each trip to the bathroom fixed that. The Dr changed the procedure slightly for my situation: 1) Procedure was done in a full hospital, not some outpatient surgical center, in case things didn't go well. 2) Saline drip was started immediately upon entering the pre-op room. 3) BP/SPO2 monitored often for 2 hrs prior to procedure 4) NO sedation was used. 5) Pediatric (small) scope was used to help avoid/lessen the vasovagal response. 6) They put me on 100% O2 for the procedure via nasal cannula. I hated this and kept coughing from it. Probably totally unnecessary. 7) During procedure only SPO2 for O2 sat & pulse was monitored. O2 sats never changed for me, but pulse was very much in-line with how I was feeling. Honestly? The bowel prep was infinitely worse than the procedure. There were two times where he over-inflated and I started to gray out and yelped. He backed off and I was fine. Not even close to passing out. Probably 15 total seconds of graying out time for the whole thing. I've had worse and more unpleasant dental visits. They discharged me ~10 minutes after the procedure. I was exhausted and asked if I could take a nap. No problem. They let me sleep for 90 minutes (my request). They would have let me sleep longer. I was back at work before lunchtime, worked a full day, then drove for 4 hours the next day with no side effects other than I kept coughing from the O2/nasal cannula. On the topic of "screening" colonoscopies, that seems to be a uniquely American phenomenon. There are other, more accurate (specificity), non-invasive ways to screen for colon cancer which are the norm in many other countries, but the politics of colonoscopies is beyond the scope of this thread.
  7. How long have you had POTS ? Probably 25 years, but dx'd 15 years ago. Also have NCS and OI as well. Has the symptoms got better since you 1st got POTS as time went by ? Yes, but there are other health issues involved which have improved, thus helping my situation a bit. That said, I still tire easily, am dizzy quite often, and still faint. How much are you able to do ? (Drive, stand, walk, shop, get out and about) ? Overall, I don't feel all that limited, but I try to keep a positive attitude and am thankful for how much function I DO have and what I CAN do rather than what I'm not able to. I've learned to be flexible and reschedule things all the time. It's very dependent upon my body. There's good days & bad days. If I'm tired and dizzy, I'm taking a quick nap before I even think about getting in the car. I can walk on flat terrain for incredible distances, BUT when I stop I'm spent. Walking on any sort of terrain kills me. Humidity kills me. Standing still is a big no-no for me. Some days I'm fine for shopping & such. Then there are other times my SO's thrown me in a wheelchair to go shopping, much to my embarrassment. What are your Pulse and BP readings ? These have varied over time. Past year or so: Resting: 99/56 p54. Sick (colds ) : 105/60, p100. Standing: pulse goes >120. Exercise: variable, but the biggest problem I have is that when I stop exercising my pulse can go from 120 to 65 in ~5 seconds which isn't comfortable.
  8. Hitting your head due to fainting or fainting while operating heavy machinery are the only dangers that I've ever heard of. When you're home, especially alone, don't try to make it to anywhere -- get on the floor wherever you are until your body stabilizes. I've been fainting for ~25 or so years. At the worst, multiple times a day. Other times I can have weeks go by between faints. I'm still embarrassed to admit it, but I do wear a medical helmet when I'm not doing well or times/activities when I'm more likely to faint. I'm still embarrassed by it, but it has worked wonderfully -- I had my first concussion last year and it wasn't due to fainting. I was feeling fine so I didn't have my helmet on and whacked my head on a steel beam hard while carrying boxes. Go figure. As @Pistol said, learning what leads up to a faint and recognizing the signs of it can help you prevent it from happening. Be aware of your body and be prepared to sit when necessary. Also look up some of the tips given for those with epilepsy. Not all of it applies to us, but things like grab rails in bathrooms can make life easier and safer.
  9. We picked up annual passes for a good discount in the middle of last year, so I've been quite a few times. I'm actually going again tomorrow. A few thoughts: 1) Go in times of cooler weather / lower humidity. Humidity does me in like nothing else. The parks get unbearably humid after summer rainstorms. Even mornings in the summer have near-100% humidity in Florida. 2) Go when the crowds are lower. Worst is Christmas-New Years, the weeks around Easter, June-Mid August. It's no coincidence that these are also the block-out dates for the cheaper season passes, which should tell you something -- avoid these dates! More people = more waiting = more standing around. 3) Cups of ice water are free at the restaurants. Everyone, not just dysautonomia folks, should take advantage of this. 4) Feel free to bring in a backpack full of food & drinks. Unlike other theme parks, Disney doesn't restrict what you bring in the park. Just as long as it doesn't look like you're going to resell it, the park has no problem with it. 5) Pace yourself. Your Disney passes are good for the entire day, no matter how many times you want to enter & leave. If we're going to spend a whole day at the parks, we'll go right when the park first opens ("rope drop") and stay until about noon. By that time the crowds have picked up and so has the heat. We then retreat to our hotel (or the cooler, quieter lobbies of the Disney hotels) and rest. We then come back later around 5pm or so and finish off the night. 6) Consider a rollator, wheelchair, or ECV. You can rent them from off-site (non-Disney) vendors much cheaper than renting them from the Mouse. Even if you don't use it the entire time, you can use it as support and it's also there if you need it. We usually average ~5-15 miles in a day. Remember, EPCOT stands for Every Person Comes Out Tired. You've never seen so many wheelchairs & scooters in your life until you've been to Disney. 7) Beware of trouble-prone rides, mainly their queues. By pacing myself I normally can make it through a day without too much trouble. I got myself in trouble with the Seven Dwarfs Mine Train last year. The queue was down to 40 minutes which is unheard of. After 60 minutes we'd barely moved and there wasn't any easy way to get out of the queue. Even fully able-bodied people were struggling with standing for so long. I was hurting, bad. Finally in another 10 minutes we got to a part of the queue where we could easily escape the line, but it was pretty much too late for me. It probably took me 30 minutes to make it to the main gate, sitting every chance I could, laying down, doing anything I could to avoid passing out. We made it to the car, where I passed out. I was still in rough shape the following day, even passed out in the grocery store. 8 ) Rides. To be honest, most of the rides at Disney are tame. The most aggressive ones are: Expedition Everest (Animal Kingdom), Rock n Rollercoaster (MGM, er, Hollywood Studios), and Mission:Space Orange (EPCOT). I did pass out on Expedition Everest and haven't tried the other two. I've hit pre-syncope on many others. In general, I don't mind passing out as long as I don't get hurt and doesn't cause a commotion. I've certainly had to rest after rides, but again, that's fine by me. 9) Portable fans. I'm partial to these: https://www.amazon.com/OPOLAR-Operated-Capacity-Portable-Rechargeable/dp/B075ZQJCMY/ Cooling towels work best in drier climates. Florida's a swamp. The fans beat the towels by-far. 10) Disboards.com! They have a whole forum dedicated to medical issues: https://www.disboards.com/forums/disabilities.20/ Plenty of POTS/NCS/EDS/etc people posting their experiences on there.
  10. Just echoing what the others have said, especially MeganMN's comments. My body generally either works reasonably well, or doesn't. There isn't much middle ground for me. Hydration/sleep/food all can make a difference. I've tried various meds over the years and while it may have made the vital signs & bloodwork look pretty at the Dr's appointments, I often felt worse than I did beforehand throughout the day. There's a similar story for bisphosphonates for osteoporosis -- they make for great bone density test results, BUT make for absolutely poor quality & fragile bones. Go by what your body tells you. A Dr sees your body for 15 minutes (if you're lucky), while you live with your body 24/7.
  11. This is what I've done over the years. Most people understand low blood pressure, which takes care of the explanation. I then tell them what to do when I pass out and that it's no big deal, and that's the end of it. If anything, my close friends are the toughest to deal with because they've seen me so much and pick up on my symptoms before I do and are more insistent that I address it, whereas I can bluff my way with acquaintances.
  12. My sleep patterns have always been irregular, but I'm used to it. I'm on the road most nights for work. It's been ~7 years since I last spent a full week in my own bed. For that matter, it's been over a year since I spent a full week in the same bed, and that was in London while traveling. A few things which help me: 1) Not stressing about not getting enough sleep. Easier said than done. 3:30a local time as I write this...and I know I'm not going to fall asleep easy...but eventually I'll get some sleep, probably not enough, but oh well. I'm not worried. I'll wake up and start all over again in 4 hours. 2) A distraction of sorts. I have a rather nasty case of tinnitus, which can get in the way of falling asleep. So, I always try to have some sort of background noise going, whether it be a fan, laptop, AC, or something making a steady sound running in the background. I then focus on that sound in hopes of falling asleep. Music doesn't work for me -- my mind wakes up and starts plotting out the sheet music. 3) A small source of heat. This is my secret weapon when I truly can't sleep. In the cooler months I have a space heater blowing towards my bed. Currently using an old XBox video game system someone gave me. I have it on my nightstand, pointed at my face & arms. I know it sounds strange, but it works for me consistently. Between the heat, wind, and noise, it lulls me to sleep within 10 or so minutes every time. 4) Doing a mind dump right before laying down. I'll take a pen & notepad and write down all of the "to-do" items bouncing around in my mind and note what active thoughts I'm working on. Once I've put all of it on paper, I can easily kick it out of my mind. In the morning, I'll pick up the notepad, read everything back into memory and start working on it again. 5) Pyjamas. It's my way of telling my body that it's time for bed. I only wear them when I'm ready to sleep and that's it. I'll switch to gym clothes for lounging about. 6) Sleep wherever you can get it. If I'm tossing & turning too much in bed, I'll go try the couch. Sometimes the floor. In a previous life, I've slept in road cases, on top of power transformers, and a whole slew of other places. Undignified? Yes, but as long as I'm getting the sleep, I don't care. 7) Alcohol. I'm a lightweight when it comes to drinking. Half a glass of wine and I'm looking for the nearest horizontal surface to sleep on. Warning: DO NOT combine with Ambien or other sleeping meds for that matter! I have a few friends who work for the airlines and the Ambien Zombie stories they tell me are absolutely funny to hear, but I'd hate to be the Ambient Zombie in question.
  13. Ugh.. all of those types of meds they tried for my dysautonomia ended up in bad ways for me. Most often with my head in the toilet vomiting violently within 30-60 minutes of taking it and dry heaves for the next hour or so, and feeling absolutely terrible for the next day
  14. I can confirm and prove, empirically, that dysautonomia does not start in the gut. That data comes from an active research project I'm working on. I can't elaborate too much more at this time. I wish I could. We are working on stuff which probably won't be in practice in medicine for at least another 10+years. Now, GI motility has A LOT to do with the microbiome in your gut, more so than diet. But it's a catch 22. Even if you have the right balance of microbial flora in the gut, without the right diet you'll lose that balance. Without getting into much detail, fiber isn't all its cracked up to be in terms of getting your GI tract moving. The best advise I can give from the research so far is to eat a diet of real, fresh foods (food that doesn't come in a box), more along the lines of what your grandparents might have eaten. Fermented foods such as kimchee, yogurt, and quality cheeses are also good. Fats are good and necessary, and they don't make you fat. Be careful on sugar intake as many bacteria unfriendly to you love sugar. Sugars will make you fat, especially the more processed they are. Avoid preservatives when possible. Think about it: if the pests and bacteria don't want to eat it, why would you?
  15. I normally have some sense of dizziness at most times, but balance stays intact. When my BP and pulse plummet, then my balance is shot, but I'm also likely to be passing out within a few seconds of that.
  16. Nope, no meds.. I tried the heart & bp med route when first diagnosed and no matter what the Drs tried, it made me a lot worse off than in my natural state, so after awhole of feeling terrible, I refused. For some reason my body seems to fight any artificial interventions.
  17. I spend as much of that good spell time catching up on all of the things I've neglected due to a lack of energy during the bad spells. I'm known to push myself to the point of collapse, irregardless of whether I'm feeling good or bad - I'm going to use every last ounce of energy I can squeeze from this body. @Pistol & @KiminOrlando, I fall into the exact same trap! I look at everything I've been putting off, pick a large project and keep going until I run out of steam, where it sits unfinished for weeks. I hate it.
  18. Awwww. I miss Niagara Falls. I've somehow ended up there every year for the past 3 years. It's been almost a year since the last time I was there, which happened totally by accident. I needed to get to Rochester, but due to flight issues I ended up at BUF a few hours later than I wanted. Got in the rental car, looked over at my GF and asked her if she wanted dinner now or in Rochester. She was hungry. We started flipping through restaurant ideas and I said, "Poutine?" "YES!!!!" So we drove over to Niagara Falls, walked by the falls, swung by the Marriott to say hi to an employee we've befriended, stopped by a restaurant to get poutine, hit a grocery store to stock up on things we can't get in the US, then headed to our hotel in ROC. Completely unexpected and unplanned but absolutely fun to go to a different country just to have dinner. If you get back there, Niagara on the Lake is well worth the drive. Quaint little town, many vineyards and wineries around. We like staying on the south end of hotel row at the falls. We can't stand the tacky tourist trap of Clifton Hill. BUT the newer casino and southern portion of the strip is beautiful and pleasant. I'm not much of a gambler, but I really appreciated the casino being 100 percent non-smoking.
  19. Has anyone experienced trembling due to a low diastolic bp? My whole body was shaking earlier today, but surprisingly no brain fog nor dizziness. I tried drinking water but that fsiled to make any impact. When I finally got home my BP was 104 /48, p90. This didn't change no matter which posture I was in, even laying down for 15 minutes. I then later had to drive for awhile and during the drive everything seemed to go back to normal. No shaking, pulse back down around 52, normal for me. No brain fog nor dizziness either (not normal for me).
  20. I like the response Kim gave and have a similar viewpoint. What, if anything, will be gained by the test results that you don't already know? What are the risks and costs? What do the test results actually mean in regards to your daily life and daily health? Even if the tests were absolutely, positively 100% accurate, the true mechanism of dysautonomia is still not understood. Current treatments reflect this uncertainty and variability. When you go to the Dr for a sinus infection, they're not culturing it and finding the genus/family/species of the bacterium in question. They just write a script for antibiotics and call it a day. In my case, we already had a good hint of what we were dealing with from vital signs alone. A tilt test and a few cardiac tests to confirm and that was it. We could have done more testing, but we had enough information to act on and went with it.
  21. Indeed, the patient's mindset definitely affects their physical diseases. Think of it as the companion to the well-documented placebo effect. If you think a medical procedure is going to be miserable and have a poor outcome, it's more likely to end up that way. That's not to say that there aren't limits to this. When you're in the end stages and have multiple organs failing, there's only so much a positive attitude can do. At the same time, I've seen amazing turnarounds happen, myself included. If you spend time around people in the end stages of life, on hospital wards, or in hospice, you pick up on the signs. When someone's convinced themselves that they're going to die / they have nothing left to live for, that's it. It may take a couple of years, but their health will decline more rapidly than a normal person of their age.
  22. I have an Omron 10 upper arm cuff and an Omron 7 wrist BP cuff. The app is decent, with the biggest benefit being you can download the data to Excel from the website. As far as the data sharing concerns, I use a separate e-mail account I set up just for this. First, the upper-arm cuff: I use the upper-arm one as much as possible. It does a good job as far as consumer BP cuffs go. The backlit display is nice in the mornings and once it was paired with my phone, transferring data works flawlessly. My biggest complaint is that it won't read a pulse below 40. If your pulse is below this, it can't even get a BP reading. Likewise, when my BP goes below 88/45, often this unit won't read and I'll have to resort to my ex-hospital Dinamap, which gets it every time, even with an arrythmia. Also, the cuff is uncomfortable and always leaves marks on my arm that last for 1-2 hours afterwards. With my "normal" BP being ~95/50, I can only imagine what kind of marks this thing leaves on people with standard or high blood pressure. The wrist cuff is... well...better than nothing. I use it when I travel and am only taking a carry-on. It consistently reads ~8 mmhg higher than my real BP and even then it's not always right. It's dead-silent which is nice, even inflation is absolutely silent, so I can use it anywhere discretely.
  23. Frequent fainter here, but no, I usually don't dream when I'm out. Usually I feel pretty rough (dizzy/nauseous) before I go out. When I wake back up, I'm sometimes a bit confused and it takes me a few minutes to reconstruct what I was thinking and getting back on track.
  24. Whether it be cancer, dysautonomia, or even the victim of a crime, it's important not to let that identify you. Your identity hasn't (shouldn't) change. I'm not say it's easy, especially when you have people doubting you, but ignore them the best you can and continue being YOURSELF. I can sympathize -- I was severely anorexic at one point in my life, down to a BMI of 11. Even with the doctors telling my parents that I was deathly sick, my parents still refused to believe I was anorexic and refused to get me help. It's been 20+ years and they still refuse to acknowledge that I was anorexic. Many years ago I worked at a major cancer hospital. The patients who got caught up in the cancer diagnosis generally didn't do well. Those who refused to let it change them generally thrived. Even severity of the cancer didn't seem to mean as much as the patient's ability to maintain their personality in spite of it. I saw patients with Stage 3s walk out the door. I saw patients with Stage 1-2s sometimes leave through the back door in a white van.
  25. THIS! I also bring copies of any relevant labs/tests/notes with me. I've just found it easier this way. My last GP was very good about this and we also had 2 separate files, the official, and the one I kept with me. The official one contained a lot less information in it than the unofficial one.
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