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Simmy

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Everything posted by Simmy

  1. I'd recommend a cooling vest, but you'll never get it in time. Consider taking a small cooler filled with ice and water, along with a bunch of small hand towels that you can dunk, wring out and place on your neck. A battery operated fan would also generate a satisfying wind chill over the evaporating towel. Good luck.
  2. Yay HEnsor! I'm happy for you. No, it is not a cure for heat intolerance, but it definitely helps by giving you much more time to tolerate the heat. It's 81F outside now and I'm wearing mine, even though I'm inside and the AC is on, but I don't have to set the thermostat quite so low and I save money while feeling cool. I'm sorry the next few days aren't expected to get above 60F in your neck of the woods and I know you're dying to test it out. Do you have a hot attic? Enjoy it.
  3. Mestinon was added to my regimen in February. It's supposed to boost blood pressure, specifically when I stand up, and it does, but about two days after increasing my initial dosage from 30mg x2 to 60mg x2 the side effects also started. I continued the plan and two weeks later increased it to 60mg x3, but had to cut back to 60mg x2, which is still more than I can tolerate. I've experienced times when it has kicked in about an hour after taking it that, when standing up, instead of my heartrate going from 60 to 120 and staying there, it still hits 120 but then slowly drops, sometimes even into the 80's while still standing, before creeping back up. Too bad it doesn't also stop the headache and dizziness. The worst side effect I have with it is nausea and abdominal cramping, especially when I stand, and crippling cramping if I'm standing for more than five minutes or from overexertion. When I took it three times a day the nausea was nearly nonstop. For me the scale is beginning to tip towards the 'it's not worth it' side, but many others have had great success with Mestinon. My bad reactions to it might just be me, or a combination of it with too much Midodrine. I'm still trying to adjust the dosages.
  4. Hey Reen, I finally received my bracelet today. Did you get yours yet? I like it. It Looks cool, it's comfortable and it does what it says. Mine came with the software in the bracelet without a separate CD, so I just plugged it into my PC, clicked the setup and started to copy-paste my health information from existing computer files. It's all self explanatory and easy to add additional diseases and information not preassigned. Once you enter all (or part) of your history, you click 'save to the bracelet' and it places a read-only html file onto the bracelet drive. The only problem I found is that besides the html file it places into the bracelet, you also end up with the original software still inside, which you don't want there. An easy solution is, after installing the software onto your computer and before creating the html file, go to My Computer, right-click on the bracelet drive and click Explore, then copy the setup.exe and folder into a backup folder somewhere on your computer for safe keeping or for later reinstallation, then delete everything on the bracelet drive. What you end up with is a blank 128mb mini storage drive in your bracelet. Once you create the html file it will be the only thing on the bracelet, leading to less confusion when a medical professional opens it, as they will see only one thing to click on, and they don't need the software to view it. After loading all of my information I noticed I only used about 30mb, so there's a lot more storage space available on the drive should I decide to add additional folders or files, perhaps containing scans of other records. As long as I name them appropriately, it could work well. Which reminds me, when the html file is created and placed on the bracelet it is automatically named something like "firstname_lastname_medical_history". You can easily rename it if you want to something like "My Medical Records". I understand the hesitation to insert a stranger's plug into your port for fear of catching a disea... umm, virus, but I imagine all medical computers run anti-virus software and I doubt they'd hesitate to insert a medical bracelet in an emergency situation. As far as doctors offices, one click from your computer prints out the entire file before you go. It also helps to wear a blatantly obvious medical bracelet in public so people don't wonder so much why I'm squatting for no apparent reason.
  5. I was denied a couple of weeks ago myself and hired an attorney. If I win he'll get 25% of any retroactive payments, with a maximum of $6,000. The second "reconsideration" stage is another person at the same office, who had no involvement in your initial denial, looking over your original claim along with any new evidence you may submit. As I understand it, it's rare that someone gets approved at this second stage, but with the right evidence it could happen. My lawyer and I are looking forward to the third stage, the appeal, where I'll get to physically show the judge how my heartrate jumps 40-60bpm in seconds when I stand up. He's confident that will win the case. You can try the reconsideration stage on your own and if you win you get to keep that 25%, but your odds are low. You could then hire a lawyer for the appeal. I decided I was willing to give up that chunk-o-change to increase my odds at this second stage, and I'm also tired of having to deal with social security and my illness at the same time. The greatest difficulty we face in getting approved is the fact that POTS is not on their 'approved diseases' list, but many of our symptoms are, like hypotension and arrhythmias, so that's what needs to be highlighted.
  6. A ranch style home is a must for us too, when my wife retires in a few years (she brings home the bacon, I eat it) because stairs are the worst, especially if I'm carrying anything, even my chihuahua. In previous topics we've discussed barometric pressure in great detail and yes, it seems the quick changes are worse than just low pressure, so San Diego would be a fantastic location for two reasons - reasonably stable barometer AND moderate temperature - that's about as good as it gets, which is why most of us can't afford to live there.
  7. No. It does not happen when I keep walking and slowly sit, then slowly lie down gradually, it only happens from sudden, quick drops in heartrate and I know this, but squatting stops the tachy instantly and there ain't no better relief than that. I'd rather have a few seconds of freaky vision than another minute of tachy and all the other wonderful things that go with it. I was just curious why this "fun" stuff happens to my vision.
  8. You are not alone with the sweating. Before I got sick I would routinely crawl into and work in sweltering 120+ degree attics in the heat of summer, for hours at a time installing security wiring, and my shirt never got damp. Now I sweat when I drink a cup of hot coffee in an air conditioned room.
  9. That's a good point, Bella, the pushing. I know that every little exertion raises my heartrate quickly so I wonder how rolling a manual chair would be, but it can't be worse than walking and I can always stop and rest. My HR with meds: Supine 40-60. Sitting 70-90. Standing 100-130. You can always download a "bell" app for your cellphone, or a "police car siren with flashing lights" app and the kids will have a blast. How about one of those new 3 or 4 wheel recumbent bikes (or trikes, or quikes) that you pedal with your feet higher up while you're almost lying down? I wonder how that would work for us. Might have a problem going through Walmart.
  10. Whenever I walk up a flight of stairs my heart races of course, usually to at least 130bpm, but then I squat and it instantly drops down to about 60. When this happens my vision starts to bug out. It's like looking through a binocular camera and the shutter keeps closing and reopening slightly, maybe 20% from the outside in, timed precisely with every slow heartbeat. It goes away within a minute. In comparison with all the other fun stuff we deal with I'm sure this is just a blood pressure thing and not dangerous, but curious. Anyone know why this happens?
  11. I think it may be time for me to jump onto the wheelie-wagon too. Been thinking about it for awhile. Not at all for inside my house, just for when I go out, like to doctor appointments, shopping on weekends, or I was even thinking about attempting an amusement park this year with my young daughters. There's no way I could ever do something like that again without a reclining, leg-elevating wheelchair. Basically, anywhere where I know I'll be either standing or sitting for a long time. I've done some quick searches and found most of them weigh around 50 pounds though. Are there lighter ones? Can they be folded to fit into a car trunk?
  12. Funny you should ask. I just got off the phone with my lawyer an hour ago. For the first year and a half of my illness I tried to work very limited hours and extremely light sedentary work, but couldn't continue even that. I haven't worked since January. Most of your questions can be answered by visiting ssa.gov, but I'll try to pass on what I've recently learned. I applied online in March, crawled in for an interview a few weeks later and handed them copies of all of my medical records from the beginning, including statements from my current PotsDoc / cardiologist attesting to the fact that I cannot stand for more than 5 minutes, or even sit upright for more than 20 before excruciating headaches, dizziness and nausea occur, along with crazy heartrate spikes and blood pressure drops. I also submitted tons of other corroborating evidence, including Holter printouts, my own heartrate recordings and journals including chronology, symptoms and descriptions of daily life with this illness. I was denied a week ago, saying I can still do my job, differently. I just hired a disability lawyer (not one of the B&B's) who told me I did everything right, but it comes down to POTS simply not being on their list of "approved diseases." He's confident I'll be approved because many of our individual symptoms ARE on the list, like arrhythmias, tachycardia, bradycardia, hypertension and hypotension, to name a few. He's certain, if and when it gets to the point that I appear before a disability judge, that simply standing up and showing the judge my heartrate monitor jumping 30 or 40bpm will seal the deal. The first stage is submitting the claim, which is reviewed by a pencil pusher at SS and is often denied. The second stage is a "request for reconsideration", which basically means another person in that same office who knows nothing about the first review, reviews it independently, which also usually leads to denial. The third stage is the appeal, when you get the opportunity to speak one-on-one with a judge whose job it is to hear disability cases and nothing else, with an open mind. Many are approved at this stage because for the first time you get to 'show' a human what's wrong with you. Other stages follow, including federal. The bottom line is, you must prove that you have an illness that - 1) You've had for more than five months. 2) Is expected to last for at least one more year, or result in your death. 3) Makes it so you are unable to perform your job as reasonably required. You must also have been employed for (I think) a minimum of ten years and have contributed at least $X in social security taxes. There are many more rules, but those are essential. If you've worked and contributed the required amount to the system, you should be receiving a statement from social security, every three months, which lists your benefit amounts should you become disabled. But you must have at least one licensed doctor who officially diagnosed you and would be willing to fill out the needed paperwork when asked. I hope that helps.
  13. That's what I suffer from too - systolic drops and diastolic rises. The worst I've recorded was 96/84, but like Firewatcher, my bad BP's are usually around a 15 or 20 point spread, where my normal is around 40 (110/70). It always occurs when all the other symptoms show up, like tachy, headaches and dizziness, whenever I do something stupid, like stand up.
  14. Whether you suffer from hypo or hyper POTS, it seems blood pressure varies wildly with most of us. Remember though, that any little movement can alter the results slightly and also, since it takes at least 10 or 15 seconds to acquire a reading and generally they're never taken more than once a minute, there's a lot more going on that it cannot see, just look at the wild changes during your TTT - while upright - up and down. I've therefore found that a chest-strap-type heart rate monitor watch (search topics) was my best tool to use on a daily basis to identify trends, triggers, and what helps best to alleviate runaway heart rates, because it gives you constant, real-time feedback. Not that I want you to go shell out another sixty bucks after spending money on the blood pressure monitor, but that was the best sixty dollars I ever spent.
  15. This will be my third summer with POTS. My symptoms started in July of 08, while on vacation with my wife and kids, in Florida. Last summer I stayed inside with the AC blasting most of the time. This summer, although my illness is getting worse, I hope to have a slightly easier time of it because of the tools I'm now using and plan to use, based on recommendations from my friends here. We've already had a 92 degree day here in New Jersey and I got to try out my new cool vest and, to my amazement, it really did help by giving me much extra time outdoors before I had to relent and go inside. Next, I'm ordering a handheld misting device to cool me down further. I'm also now considering getting a reclining wheelchair with horizontal leg rests (thanks EarthMother for your story) which should add even more 'human' time to my outdoor treks, especially if I attempt an amusement park with my young daughters this year. I'm even thinking about purchasing a funny looking hat on Amazon that rests slightly above your head, has a built-in fan in the brim pointed to your face and runs off of its tiny solar panel on top, or batteries. Honestly, at this point I really don't care what I look like as long as I feel better. My wife and I always thought we'd retire to Florida, then I got sick and that idea got thrown out the window, but then again I've learned from previous topics that humidity, altitude and perhaps even air salinity can affect how we feel too, although admittedly not as profoundly as extreme temperature changes. I agree with CatLady though that stable weather is best, but those locations are limited and out of our budget. Reen - Bermuda sounds good too, but US citizens cannot own property there, even if we could afford it. I guess that leaves me with no other option than to use all available tools to live with the weather as best I can. Blue - The good news is, when half of us suffer at least the other half has it easier. Enjoy the next few months. I can't wait until they find a tiltless habitable planet with constant nice weather.
  16. I second Arizona's suggestion of getting your own bp monitor, and to check it in all postures. I'm glad your hr is back to near normal. It is important to document the fact that you were raised immediately after lying down and getting hooked up instead of waiting the standard 15 minutes, because that absolutely skewed your results. Based on a resting heartrate of 80bpm, you were not "just above borderline", but in fact your hr probably would have exceeded a 50 or 60bpm jump from supine to upright. The same thing happened to me on my first TTT and it was deemed negative, until I later found another doctor who knew what he was doing.
  17. It does look, to my untrained eye, like you're just above borderline for hyper-POTS, simply because your supine numbers were high to begin with, otherwise they'd be well above. Were you flat and relaxed for the FULL 15 minutes before they took your supine readings, or are your resting hr and bp always that high? In any event, congratulations for moving a step closer. I know that's a relief. Rest up.
  18. The only logical explanation I can come up with is, if you're using an ear thermometer, if you have a buildup of wax inside the canal it can block the infrared light from properly reading your temperature, while working correctly on others. Other than that I got nuthin. I think your last group of questions were for Endure?
  19. I would think a rise would be normal too. Do you have another thermometer you can use to test? Perhaps the one you've been using is somehow defective. Or try the one you've been using on someone else and see if the results are identical. Sounds very odd.
  20. I tried Metoprolol and Fludrocortisone and didn't tolerate them very well. My doctor and I finally settled on (for now) a calcium channel blocker - Verapamil. According to my doctor, although it's often used to lower blood pressure (bad for me) it's also good at lessening the quick heartrate spikes. To combat the blood pressure dropping effects of Verapamil, he also put me on Midodrine - a vasoconstrictor, Desmopressin (DDAVP) to retain fluid, and Mestinon, which also boosts blood pressure but turns me into a nauseous zombie. Although I've gotten worse, overall I think the meds are helping. Without them I doubt I'd have the energy (or will) to even type this on my phone.
  21. The only temperature related oddities I've found were when I first experienced symptoms two years ago, before I knew what I had and before I started documenting blood pressures and heartrates. Back then the only "medical tool" I had at my disposal was a thermometer, and I noticed my temperature rise rather dramatically, as high as 2.5*F in a few minutes, when I had episodes, which included runaway heartrates and profuse sweating. It took 1-4 hours after the episodes to go back down to my normal of 97.6. I now recognize those episodes to have been caused by nothing more than standing and not knowing any better, but having those experiences leads me to believe that body temperature can vary wildly and change faster than we think, especially with us, depending on many factors including sleep, food, activity... posture?
  22. Thank you, Reen. Yes I do, especially, "Well, you look smart."
  23. I don't think I was completely out, but it's possible I blanked for a second when I hit the floor. I guess I just needed to reboot. I looked up MCAD and, after first learning about the Massachusetts Commission Against Discrimination, I found what you were referring to and no, I think it was only POTS, just more severe than I've had before. The buzzing, I'm assuming, is an effect of blood loss and therefore some oxygen deprivation to the brain, which causes crazy sensory reactions. I cannot say I was feeling any impending doom as this was occurring, more like everything was falling, or drooping, and I became very weak as I pulled into the driveway. And yes, thanks for reminding me, I was sweating and yawning quite a bit leading up to the event. Lissy - My "buzzing" only lasted about 15 seconds, and grew from a light hum to a volume that drowned out all other sounds before I hit the deck. I can't imagine listening to that noise in my head for as long as you describe, although I imagine yours doesn't remain that loud for the duration. Thanks, Flop, for clarifying. I'm certain now it was not anaphylaxis. The heavy chest and trouble catching my breath I experienced were identical to those I've had before from overexertion or standing too long. It was not an air problem, like I've witnesses with my brother who is allergic to pomegranate and carries an epi pen. I, on the other hand, have no allergies that I know of. Thanks again, everyone, for your concerns and explanations. I'm glad y'all are here.
  24. I know what you mean by "getting up too quickly..." I get my worst dizziness at those times from the quick drop of blood, but this was different. I felt pretty good doing my morning routine (which is very limited) before we left, but over the next five minutes or so I went straight downhill. My BP - I don't know what it was when this happened, but based on previous episodes (never quite this severe) my systolic drops and diastolic rises to 96/84 as one example, so I suffer from low pulse pressure, but that's usually when I'm standing or sitting upright for awhile, and in the car I'm reclined like on the couch... except the feet, they're on the ground! I hate them, but I may have to wear my compression hose again. And yes, it's hard to admit it may be time to hang up the keys. It would have been quite a sight, had an officer been present, me trying to walk a straight line at the scene "Pavement Inspector" Classic! Thanks for the laugh. I should make another shirt. Yes, I did have a few minutes of warning and I should know better by now, it's just that I've never felt that bad before out of the blue while driving. I'm seeing my PotsDoc in two weeks anyway, so we'll see what he says. I should have clarified, I've had the numb left arm before, when all of this first started about two years ago, before I knew what I had, and my doc and I understand it to be caused by the lack of blood flow to the extremities when I'm standing, like the tingles only more, but again, I've never felt it that severe while driving. And the way my seat is reclined I can only reach the bottom of the wheel so my arms were actually resting on my legs. "Get out of the car and stand up"? Whoa, that's the very last thing my body needed and I doubt I could have stood up if I tried. Didn't you mean lie down, lissy? I think you got it Tammy. We did leave 20 minutes early this morning and I now realize that my morning meds were in me for only a few minutes, instead of the normal half hour or so before we usually leave. It was that buzzing sound and feeling in my head that I've never experienced before so profoundly, that scared the crap out of me and I was wondering if you always "hear" this before the lights go out. Thanks guys.
  25. I couldn't have said it better myself, Casper, you gotta be able to laugh. Humor always makes me feel better. But I know how hurtful it can be when for years, someone you thought was your friend and understood what you were going through, was in fact laughing at you behind your back and lied straight to your face when they said they understood. I can't get over how cruel some people can be, but I can appreciate why many are unable or unwilling to sympathise with us, as it's simply something they've never heard of and have a hard time buying it. It's obvious in society that the little old lady with a cane always gets the seat on the bus, the wheelchair user has the door held open for them, the hairless cancer patient gets looks of caring sympathy and anyone else with a recognizable disability is looked upon as someone who deserves our understanding and compassion - for that I am proud to be human. With further awareness we will eventually earn the respect we deserve. For now, since our quality of life is often compared to that of someone with congestive heart failure, perhaps that's what we should tell people we have, which is really not that far from reality (symptom-wise). And I'd gladly trade my left elbow for a POTS-free life.
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