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Everything posted by Simmy

  1. I like Firewatcher's idea, white over a wavy scarlet. As for a logo, how about this: <----
  2. Happy birthday Dani. As others have pointed out, Vegas can be a Potsie's worst nightmare, (overstimulation, excessive heat and rivers flowing with alcohol), unless you do it right. Many of the hotels are interconnected underground and are air-conditioned, with lots of places to rest if you need to, so as long as you stay inside and refrain from overexertion you can have a wonderful time with your friends. As far as alcohol goes, if your friends insist you drink, go for it, but every time you take a shot of alcohol they must also take a shot of cyanide so they'll feel as you will. Alcohol for us is poison! Period! Don't do it. Without question you'd be far better off smoking a joint than drinking booze (medically, not legally). Yes, show them some of the videos before you go. If they are true friends they will understand and support you, in fact they should stop you from drinking even if you change your mind and decide to try some. Friends protect friends, even from themselves. Send your friends a link to this thread. Perhaps then they will understand. "Friends don't let pots-friends drink and drop."
  3. Don't worry about accidentally pressing the button, ..it happens. Yes, I've had my heart stop hundreds of times since I became ill (only one beat, or two at a time at most while lying down, three in a row during a massive tachy while overdoing it) and I'm glad you caught it. As far as catching a faint, ooh, that's a tough one. Let me first say, "Don't try this at home." I don't know that I would ever suggest that you perform an activity, while wearing the monitor, that you know will get you to that point for documentation purposes, but if fainting is commonplace for you then I (hypothetically) quietly say go for it, but make certain someone is with you and that you have a soft place to fall.
  4. I'm sorry, I can't help you find a cardiologist in Georgia, but I have to admit I've been considering voluntarily amputating my own legs to eliminate the blood pooling problem
  5. Observing your heart rate is certainly not focusing on the negative. I got my Polar about two years ago and it quickly helped me to identify triggers, and what helps. It is important that you know. I've even worn mine while sleeping for over a week straight (hooked up wirelessly to a heart rate recorder) to determine my sleeping heart rates which I suspected were getting real low from the meds. They hit 40bpm consistently. A Holter monitor a week later confirmed it, spot on, at 40. I can appreciate how some may dwell on the numbers negatively, but I look at them as pure data, that was invaluable information to assist me in learning my "new" body. Best sixty bucks I ever spent. And yes, it is quite amazing how many calories we burn... even just standing (just look at the amount of sweat after a few minutes). It takes a huge amount of energy to pump a heart that rapidly.
  6. http://www.mayoclinic.com/health/exercise-...NSECTIONGROUP=2 Quote - "If you're a healthy adult doing vigorous activity, aim for a target heart rate of 70 to 85 percent of your maximum heart rate - the upper limit of what your cardiovascular system can handle during physical activity. If you're not fit or you're just beginning an exercise program, aim for 40 to 50 percent of your maximum heart rate. As your fitness improves, increase the intensity of your workouts. To determine your target heart rate, use an online target heart rate calculator. You can also do the math yourself. If you're aiming for a target heart rate of 70 to 85 percent: Subtract your age from 220. This is a rough calculation of your heart rate. Determine the lower end of your target heart rate by multiplying maximum heart rate by 0.7. Determine the upper end of your target heart rate by multiplying maximum heart rate by 0.85." ... and that's while exercising, not just walking.
  7. Hi POTS Dad, Welcome. It sounds to me like you are on the right path and have a great handle on things. Your daughter is fortunate to have parents who will stop at nothing for her health and future. Everything you said seems correct, except, "My daughter is consuming as much sodium as possible". It's probably not enough. I too was advised to add "lots of salt", or at least 5 grams a day. However, if your daughter is simply dumping a lot of salt on food as I do, remember that a large amount ends up on the plate, the table, the floor, or the napkin. It's also hard to gauge exactly how much comes out of the shaker. If you have a kitchen scale I'd recommend preparing daily doses of salt in tiny cups, and whatever her doctor suggests the daily amount to be, add 25% for spillage. I also want to mention squatting and how quickly it can stop tachy when she's standing and needs to lie down but cannot for whatever reason. I wish her and you the best, but your actions will work far better than my wishes. Don't stop.
  8. Thanks Mary. It wasn't scary, I knew it wasn't going to kill me, but it definitely wasn't fun. The only real emotion I was feeling at the time was anger at social security for not believing me. My mind was in "See, I told you so!" mode. But we're getting off topic. The first time I felt my arm going numb was the first time I had a POTS episode, while I was standing in our hotel room in Florida while on vacation. This is before I even knew how to spell POTS, let alone what it was or that I had it, so after standing for some time I felt "funny heart stinging", beating kinda fast, sweat pouring out of me and a numbing left arm... immediately my mind said, heart attack! Get to hospital now! Of course once I got there (scary drive) and was lying on a bed I felt better and along with everything else, the numbing disappeared. Today I know it was all due to gravity, and now, whenever I feel the tingles starting I notice that I'm standing or sitting up. For my body there's a definite connection.
  9. Oh yes. We recently had a nice discussion about that... http://dinet.ipbhost.com/index.php?showtopic=14802
  10. Possibly a blood flow issue, or lack thereof. I occasionally get numbing hands and feet (only once did my entire left arm go numb and part of my right arm), but it always seems to happen when I'm doing something stupid like standing too long. Does it ever happen while your son is exercising?
  11. You actually don't need a TTT to be officially diagnosed, but it certainly helps to be certain, and Christy is right, you can take one without drugs. I had my one and only TTT after I suspected I had POTS and convinced an unknowledgeable endocrinologist to "allow" me to take the test to prove my theory. I failed the test. I only went from 65 to 90. I was having a "good day". Once I found my PotsDoc/cardiologist and showed him my video and how my heart rate rises when I stop walking, the diagnosis was obvious to him and then began the meds... all the meds... yuck. If you do go in for a TTT make sure you are lying flat and relaxed for the FULL 15 minutes before they take your baseline and begin to raise you. That is crucial and was screwed up on my test. I was down for only four minutes and that likely also skewed the results.
  12. The slight rise when you first lie down might simply be due to you exerting yourself changing positions and with us, every little thing we do raises heart rate slightly. If indeed you have blood pooling issues it makes perfect sense why you're able to walk, but not stand - something unique to us. It's because while you're walking the muscles in your legs are working and therefore squeezing your blood vessels which helps to force the blood back up. When you stand it all falls down. I've watched my heart rate go from 130 walking on my treadmill to 150+ seconds after stopping and just standing in place. And yes, eating many small meals is much better than a large one.
  13. Mine is a cheap Polar I got about two years ago and it still works great. Many others like Polar too, just make sure it comes with a chest strap, not the "place fingers here" type. It is odd that your heart rate goes up going from sitting to lying down, especially since you said walking is easier than standing, and that, combined with your pale face when standing leads me to think you might have a blood pooling issue. Measuring your heart rate with the watch will definitely give you more accurate numbers to go by. When you lift your arm above your head, your heart needs to pump faster to get the blood up. Good luck, fellow dude.
  14. Hi Brian and welcome. I'm glad you found us, but sorry that you needed to. I began my POTS journey the same way you just did, by posting a video on Youtube and then asking a forum like this one what they think, so obviously you're intelligent! And I doubt there are more than a handful of us who weren't repeatedly told we were suffering from anxiety. They just don't know any better and that's why we're here. 91bpm to at least 124bpm does fit the bill, especially considering you started from a sitting position. I suspect your supine heart rate is between 60 and 70, which certainly meets the criteria for POTS, but only a qualified doctor can make the diagnosis. If you can afford 60 or 70 dollars, I highly recommended getting a heart rate monitor watch with wireless chest strap, so you can see your heart rates live, realtime, and see the trends as they occur. If nothing else, it will help you to identify what makes it better and what makes it worse. Perhaps you have a friend who has one that you can borrow. For now, listen to your body. When it tells you things are getting fuzzy, stop and drop, but no need to roll.
  15. Ah yes, you and your boss are probably right. I forgot, you're hyper, I'm hypo. Same symptoms, sometimes different causes. It's hard to keep track of the different types of POTS we all have. Sorry about your fireworks show. Our nearby show just got canceled due to the economy. There's always tv, better colors than live Enjoy the Xanax. Happy sailing.
  16. It's hard to resist doing things when you feel up to it, but we must remember to not overdo it. You were very active, doing a lot of things, thinking about a lot of things and then had to go out and "gather" your son... did you pick him up? Carry him? Carrying any weight for me is as bad as climbing stairs. It's also happened to me many times, that I get sudden head pressure, dizzy and nauseous and I check my vitals but they're not too bad - heart rate might be a bit high but blood pressure is normal. I think it's my meds trying to work and maybe succeeding in boosting blood pressure, but yet not enough blood is getting to the brain. Lying down or squatting always helps me then. I've come to recognize by now that when I squat or lie down my heart rate instantly drops dramatically to a very slow rate very quickly and I always feel something like a flutter when this happens. Perhaps that happened when you sat down? I hope you're better now.
  17. I agree. Stress or anxiety on their own certainly impact our systems negatively. Add it on top of POTS and it can only make it worse. Someone recently suggested gathering all the stuff on the floor into one spot, maybe with a wide broom, then deal with it all from there. Maybe sweep the kids into that same pile
  18. Maxine - The way I look at it, for 29 years I've paid my monthly dues to the disability insurance company (in this case, the government) and now it's time to collect on the policy, no different than any other insurance policy, so I have no shame or loss of dignity by getting the money I deserve. My doctor did indeed take the time to fill out a functional capacity report on my behalf, but who knows if anyone at SS even looked at it. I have little doubt that I'd easily win at the hearing stage, but I'd love to not have to wait that long so hopefully the video, along with my week-long heart rate reports will be enough at this second stage. I'm glad you finally got approved! Yogini & corina - I'm happy that the beta blockers work for you, I remember when I first tried them they worked amazingly well at lowering heart rate, but I quickly began developing severe headaches, way worse than anything I'd experienced before, even while lying down, so my PotsDoc got me off of them and put me on Verapamil, which also worked well, but only for a few months. I have noticed though that when I'm standing, even when my heart rate slows down some when the meds do their thing, it doesn't necessarily help the headache and dizziness to the same extent. Lots of trial and error.
  19. My disability attorney asked me to record my stand-up heart rates, 3 times daily at roughly the same time, for 7 days straight. That ended yesterday and I just finished compiling the last of the data. Many of you have seen my latest video on that ?really bad day? and I?m glad it happened during the 7-day period. Moronically, I had just removed my SmartSync heart rate recorder five minutes before I shot the video, but I did document it just before, and a similar outrageous heart rate jump again three hours later, which showed an increase of 86bpm in 19 seconds, followed by a drop of 87bpm in just 14 seconds. I?ve uploaded 3 photos to Flickr so far. One is of that huge spike and drop mentioned above, the second is of me driving my wife to the ferry 10 minutes away on a good day, resting and then returning home, and the third is an overview of the entire seven days, including additional mundane daily activities. Make sure to click on the ?All Sizes? magnifying glass above and to the left of each photo to see it in greater detail. Here?s the link: http://www.flickr.com/photos/simbofats/set...57624071020877/ I?m glad to share this with my friend here, but it does come with a question. As we all know, the benchmark is a rise of >30bpm within ten minutes, but mine almost always gets there within 20 seconds, and almost all of those 21 ?stand tests? you?ll see began from lying down in bed or on the couch, while only a few began from a squat. How quickly do your heart rates jump up when you stand, and drop when you lie down or squat?
  20. Interesting topic lieze, and definitely true. I also get very dizzy when I bend over to pick something up, that's one of the reasons I squat instead. When I bend over, my legs are still vertical so the blood pours down and the symptoms worsen. When I squat, my leg blood vessels squeeze tight and instantly force the blood back up, which is why my heart rate drops so dramatically. I haven't found anything that can drop heart rate faster, not even lying down, although ultimately it ends up at the same place. I can usually stay squatted for up to five minutes or until my knees give out. Up is the only real problem and I normally do it slowly and gradually. Sitting on the floor for me is almost as bad as sitting in a chair - not as bad as standing of course, but way worse than squatting or lying down, I guess because the leg blood vessels are wide open when my legs are straight out and the blood still falls into them. Unfortunately, I've never been able to sit genie style, but I imagine that would help tremendously from the constant squeeze.
  21. Yes, I actually do get on my elliptical trainer at least twice a day, except for really bad days. Because of my blood pooling, when I get on I'm at about 120bpm, but as soon as I start walking it drops to between 90 and 100. It takes 2 to 4 minutes for it to slowly creep up to 130 and that's when the headache and dizziness start and I get off and lie down. As long as I continue walking (up to the 4-minute limit) my heartrate remains pretty stable, but the instant I stop and just stand in place I feel the blood falling back into my feet and my heartrate immediately jumps up at least another 20bpm and all the nasty symptoms shift into high gear. Start walking again and it drops 20. Amazing! It's obvious why this happens, but still incredible how the heart does exactly the opposite of what it would normally do if I weren't sick, when I stop exercising. I do the elliptical trainer because it's about all I can physically do, besides couch based leg lifts, to keep from becoming too deconditioned and to maybe deflate the belly a bit. As far as it lowering my heartrate, obviously I don't do nearly enough to have any sort of impact on it, but before my meds my sleeping heartrate was between 56 and 60 (early Holter monitor), now it's between 40 and 43 (latest monitor).
  22. Thank Chaos, I'm better. My days don't usually get that bad. Today is actually a great day - 56 to only 104 last I checked. Amazing how a 48bpm jump upon standing is a great day. Yes lieze, we must learn to listen to our bodies and submit when it tells us to. Gripping the wheel and saying "I'm almost there, just a little more, I can make it" is something I'll never do again either. You're right, we'd be wise to follow our gut, but I think mine is telling me to quit all my meds and start over, and replace my legs with prosthetics so I no longer suffer from blood pooling Whatcha think? Corina - I was on a beta blocker early on, but did not tolerate it well - extreme headaches, much worse with it, so my doctor put me on Verapamil, which initially did lower my heart rate by close to 30bpm, but over the two years has become less effective. I wonder if I'm simply building a tolerance to it. Thanks Futurehope and everyone else. With that video I too can't imagine being declined SSDI again. My attorney also asked me to record my daily heart rates, three times daily, for a week and print out the results to be submitted (I use a SmartSync Heart Rate Data Logger that receives the signal from my chest strap, records it, and displays it in graphical format... I'll post a link to the printouts soon). I just finished my week and some are astounding. I also would rather lie down than squat, but sometimes you gotta do what you gotta do to stop the tachy quick, and squatting works even faster than lying down. I don't do up so good though. Naomi - Dr Tullo is very knowledgeable about POTS, methods and tools that help and the latest meds. I'll admit he is not overenthusiastic about delving deeper into the underlying cause of my particular case, although we believe a bout of bronchial pneumonia that I suffered two months before becoming ill caused it, but we did figure out what kind of POTS I have and how to best treat my symptoms. I tend to agree with him because the treatment would likely remain the same anyway. You can check out his website here: http://www.njfaint.com/
  23. I can't even count the times I was told, way back before I figured out what I had, to calm down, that I was having a panic attack, or anxiety, or hyperventilating... and they're the "experts". We know better now and thanks to dinet and its members, countless others do too. Yes, it does leave me breathless when that happens. It's totally involuntary, I even said on the video that I was trying to breathe normally, but I guess with my heart pumping so fast and not filling the chamber completely before pushing out the blood, my brain compensated for the lack of oxygen by making me breathe that way. After watching it again I heard myself say "I'm getting buzzy in the headed." Man, what a ride! Naomi - I'm lucky to have found my PotsDoc / cardiologist on the physicians list here. Dr Nicholas Tullo, East Orange, NJ. I'm happy with him and I know I'd be much worse off without him. The watch is a Polar. I can't read the model number, but It was the cheapest one, about $60 two years ago at modell's, but I'm sure you can find it on Amazon or elsewhere. Just make sure you get one that comes with a wireless chest strap transmitter, so you can view your heartrate in realtime and see the trends. As far as barometric pressure, I'm convinced it has a real impact on how we feel, in fact just a few weeks ago we had a nice conversation about it. Search for "Linking Barometric Pressure". My meds have helped some, to the extent that I'd be much worse than in that video without them, but... lieze - You're right. Again I performed the activity (driving, standing) only about half an hour after taking my morning meds. Could another few minutes really have made such a huge difference? Still, there have been times when I woke up a little early, went to the bathroom and then back to bed with only minimal tachy (120-130), before taking my meds. Maybe it was that pink flamingo / yellow sailboat thing (private joke). It is possible though, as you suggested, that my meds simply aren't working for me as they once did. I am after all getting worse overall over the last few months. OK, weight. Before I got sick two years ago I would eat over 3,000 calories a day just to keep from losing weight. I'm 5'10" and back then I weighed 142. I was that way all my life, I could eat a cow and lose weight doing it. Within six months of becoming ill I ballooned to a high of 168, even though I had little appetite and ate much less, but obviously my activity level also tanked. I literally looked like I was in my third trimester, it all went straight to my belly. It took over a year, but I've managed to get back down to about 150 now, but don't ask me how I did it because I haven't got a clue, if anything I'm even less active now. Maybe the tachycardia, which instantly induces sweating, helps to shed the pounds
  24. Thanks everyone, for the hugs and well wishes. I appreciate your concerns and suggestions too, but honestly, I'm fine. I'm seeing my PotsDoc in two weeks anyway and I'll tell him about this really bad day. Jaqui - Yes, of course you may. This is all normal for me now, although this day was certainly much more severe than 'normal' and disturbing. Three hours later I checked it again, this time from lying on the couch to standing up, and it jumped 89bpm (61 to 150) so it wasn't the squatting that caused it. I was better about eight hours later though - only hitting 120bpm when I stood up from 60bpm - back to 'normal' I Usually have a few minutes of standing time before the symptoms become too severe to continue, but this was ridiculous. I did give my morning Verapamil, Midodrine and Mestinon, more than half an hour to set in before getting out of bed, along with about 12 ounces of Gatorade, (I always have plenty left over from the night before) so it wasn't due to dehydration either. If I was thinking clearly I would have checked my blood pressure at the time, but I'm sure it wasn't good. When I'm lying down and feeling well it's generally 120/70 and when I stand up it averages 100/80, so I suffer from narrowing pulse pressure, but during this event it was surely narrower than that. The reason my heartrate started off so high (104) was because I was moving around and talking a lot before I stood up, otherwise it would have started at around 70bpm, as it dropped to 78 after the first squat, and again 82 and dropping further after lying down, so in reality the rise and fall, for all intents and purposes, would have been about 80bpm. I do pool in my feet, so much so that I literally feel the blood rushing down when I stand up and oozing back up when I lay down. That's why squatting instantaneously drops my heartrate so drastically, because it squeezes the vessels and shoots the blood back up. Yes, I take my DDAVP only once before bed and ingest way over 5gm of salt per day, along with 3 to 4 liters of Gatorade and water. I only wanted to document this to help my SSDI case and to encourage others to do the same, especially on bad days, even if it's a bad hair day Getting this documented was worth the pain and discomfort and I'm glad to share it with my many friends here.
  25. Hi guys, I woke up this morning feeling lousy, so I took my meds and stayed in bed for half an hour to let them kick in. When I got up and returned from the bathroom I felt so horrible that I decided to document what a really bad day looks like. I shot a quick video with my cellphone showing the outrageous heartrate spikes when I stood up. Normally when I stand up, on good days I'll spike 30 or 40bpm and on bad days 50 or 60, but this morning... well, here's the link: I just emailed it to my disability attorney. Maybe now social security will believe me? I hope y'all are having a better day than me.
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