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Simmy

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About Simmy

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  • Birthday 12/07/1963

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  1. 1. True or False - POTS really has little to do with blood pressure...meaning your bp doesn't have to drop upon standing for a diagnosis of POTS. True. While most do experience BP changes, it is the increase in HR that counts. 2. Does your heart rate increase on standing by 30 bpm every single time? Does this increase need to be sustained for a certain length of time to be POTS? Mine does, but it need not to qualify – an increase of 28bpm+ due to change in posture after any period of time less than 10 minutes qualifies. 3. Does your heart rate increase when you eat? By alot? Yes, but not by a lot, maybe only 10bpm directly attributed to digestion, but it sure does wipe me out. 4. Do you have times where you feel your heart rate is normal, bp is normal, but you feel AWFUL...like can't put it into words AWFUL? Yes. I’m convinced that while your blood pressure may read normal as measured on your arm, it may not necessarily be stable all over the body – I suspect cerebral blood flow may be diminished even while BP readings show normal. 5. Is it insomnia for some reason, or do you just feel so sick that you can't sleep? Hard to put my finger on that one. Just an overall uncomfortableness that makes me toss and turn throughout the night. 6. Is it true that the GI pain could be caused by different things - motility issues, blood pooling in the stomach area, or lack of blood to satisfy the digestive process?? Makes sense. 8. Tachycardia - how high is too high? I have two different “too high” numbers. The number I would say to never exceed would be your Maximum Heart Rate (220 minus your age). I also try to avoid sustaining a heart rate that will exhaust me – basically, 120bpm+ for more than a few minutes at a time.
  2. Thanks for the re-welcome. You would expect, for both the father and his daughter to have contracted POTS, that besides the genetic component, environment might be a factor too, but I can call that one a resounding no. You see, Naomi’s mother and I have been divorced since Naomi (yes, great name) was about five and she lives with her mother some 3,000 miles away, in Oregon. She flies out to see me here in New Jersey three times a year for only a week or a few at a time and I haven’t seen her in person since late March, so environment as a possible factor becomes highly implausible, which makes genetics highly probable. I created a defective human But she still loves me anyway The exercises I do include crunches (I’m up to 150 daily… well, let’s say at least 5 days a week; some days it just ain’t happening) and pedaling for 30 minutes a day on a pedal exerciser that sits on the floor while I sit semi-reclined on the couch. Here it is on Amazon: http://www.amazon.com/Isokinetics-Inc-Folding-Adjustable-Exerciser/dp/B003OYOIFC/ The key for me has been doing exercises that do not raise my heart rate too high (everything horizontal) while strengthening my abs, thighs and calves, so when I stand or sit upright it takes longer for blood to pool in those areas. While doing my crunches I rarely go over 80bpm and I stay around 100bpm while pedaling at about 80RPM with the friction knob set to medium-high. Oh, and the POTS shirt was a design I concocted in my warped mind that I used for myself and also made available to anyone else who wanted to use it. You can see the designs, copy any you like and then go to zazzle.com or some other online T-shirt printing site, upload the images (I like #2 in front and #4 on the back) and have the shirt printed and delivered to you at their price. Here’s the link to the designs:
  3. I had to get away. I began focusing on my illness a bit too much and it was making me crazy. My apologies to those I may have left 'hanging' in the middle of a discussion, and thanks, issie, for noticing my absence. It took some time for me to find the right balance between POTS and normal life. To update my condition, I'm down to only two daily meds – Propranolol and Desmopressin – and along with lots of recumbent exercises for legs and abdomen, my standing time is up to nearly 10 minutes (on good days). A Poor Man's Tilt now goes from an average of 55bpm supine to around 90 or 100 standing, quite an improvement, but any upright physical activity still pops me well into the 120s, 150s and beyond, so much more work is needed. Unfortunately, just about two weeks ago, my 16 year old daughter began complaining about "funny heart feelings" and being really tired. One PMT later and it was confirmed – 62 supine to 114 standing and instantly back down to 70 lying down. We got her a Polar heart rate monitor watch immediately, along with a SmartSync heart rate recorder, and we discovered she hit 192bpm walking from the school bus into school wearing a heavy backpack. The first available appointment with a POTS specialist is in early August, but we've already got her on our own regimen, including 5gms of salt daily, a gallon plus of vitamin water, crunches, leg exercises, a rolling backpack, a shower stool, getting her 20-30mm/hg compression hose, and she's quickly learned all the countermeasures, especially squatting. Her favorite so far was getting to wear her very own POTS shirt, (you know the designs I created a while back) just like her father. Only two days of school left, which is very good news, so she can concentrate on herself over the summer, but she already managed to get special permission from the school nurse last week to have a drink with her and elevate her feet in class, lie down when needed, and she even got her very own elevator key, simply by showing the nurse her heart rate monitor going into tachycardia by standing up. Way to go, Naomi! Life never follows a defined path; it throws you curveballs when you're expecting fastballs and sometimes you swing and miss. I've struck out many times over the past few years, but I've also hit a few and scored a couple of runs. Thankfully, Naomi has lived POTS vicariously through me and has a good idea of what to expect and how to deal with it, but most of all she recognizes that, as a teenager, her prognosis is far better than mine could ever be and that she can ultimately win the game, but now is not the time to swing for the fences; I'd be happy with a well-earned walk to start.
  4. Maggie, I don?t know what your actual heart rates are at different positions, but in my case, lying down around 60, sitting 80-100 and standing 120+, so although my heart rate is considerably lower when I?m sitting, it is still well above what it should be in that ?inactive? position and in fact sometimes exceeds the POTS criteria of 30+. If you?re anything like me, that should be sufficient. I imagine, if worded properly, your lawyer can argue that while you may be able to sit for a while, you cannot for a long period of time and certainly not for eight hours, five days a week. The reason is that, although your heart rate goes down when you sit from a standing position, it does not drop to nearly the same level as that in a horizontal ?resting? position like that of a healthy person, so it works harder and harder just to keep you in that position, which builds the inevitable exhaustion, disabling you from continuing or showing up for work the next day. It is also important to explain that tachycardia is but one of many, disabling symptoms, including blah, blah and blah, but it is the only one that is easily demonstrable. A commonality many of us share is feeling lousy in the morning and somewhat better in the evening, so I should think that wouldn?t be an issue one way or the other. Yes, I did add a few notes on the graph indicating when I was lying down and when I was standing. Here?s a link to one of them: I hope that helps.
  5. Stimulants have been reported to help with brain fog, but that?s a secondary and relatively minor symptom for me compared to tachycardia and all the other fun stuff, which some have also reported worsening with stimulants. Besides, my coffee and Nicorette gum stimulate me enough as it is. MM - Of all the doctors I've seen since this all started for me two years ago, he's the first and only one I actually look forward to seeing, because I know my questions will be answered and not ignored. He's a good guy. I just have to convince him to put a recliner in his waiting room for the exclusive use of his POTS patients.
  6. That?s great news, Julie. May your continuing journey toward normalcy be easier than ours
  7. He fervently believes in trial and error when it comes to POTS and meds, so trying a new one has never been an issue. He has prescribed, at one point or another, Verapamil, Metoprolol, Fludrocortisone (Florinef), Desmopressin (DDAVP), Midodrine, Mestinon, Cymbalta and Propranolol. I?m currently taking only Verapamil, Propranolol and Desmopressin, which seems to be the best combination so far for me, with an occasional Midodrine when I need a BP boost.
  8. I?ve been seeing Dr. Tullo every month or two for almost two years now, ever since discovering I had POTS and then finding him on dinet?s physicians list. He?s up on the latest research and treatment methods, including Dr. Levine?s exercise program, and very knowledgeable about different medications, their interactions and how and why they do what they do for us. Most of all, unlike most doctors who tell you what to do, he takes the time to listen and works with you to come up with an appropriate plan. Tell him Simmy says hi.
  9. "... the only symptoms of POTS are fatigue and tachycardia upon standing"? Really? I suppose dizziness, headache, nausea and the plethora of other goodies are just coincidence? Technically, even tachycardia itself is not a symptom of POTS either, but rather it and all the aforementioned symptoms are caused by the symptom caused by POTS (bad vasoconstriction, etc.), but in reality we suffer from a multitude of symptoms caused directly by POTS. The statement the doctor made was irresponsible, confusing and outright wrong. I'd expect more from a "dysautonomia specialist." You are your only advocate. Keep fighting for yourself.
  10. You?ll have to keep waiting for the real professionals, but as far as I?m concerned both of those BP readings at the drug store were indeed within the ?normal? range, but everyone is different. What struck me were your standing and sitting heart rates, both nearly identical in the 70?s, so you may want to wait until you really need the Midodrine, because it lowers heart rate by constricting your blood vessels, which also boosts blood pressure, especially while lying down. It is sometimes difficult to tell the difference between high and low blood pressure without a BP monitor, you just know you feel lousy in both cases. Generally though, high blood pressure makes you feel like you?ve had too much coffee, a tingling, anxious feeling, perhaps accompanied by flushing or burning eyes and of course, headache. Low blood pressure is a drained, slow, zero-energy feeling, which also comes with a headache, but of a different variety. But again, everyone is different and may not feel it the same way. Midodrine is a unique med because it works very quickly, but only lasts a few hours, so it?s one med that doctors often prescribe to be used ?as needed?, but you need to know when it is that you need it, which is why I recommend getting a BP monitor if you have the means. But as usual, my best piece of advice is to consult your doctor.
  11. While there have been documented cases of patients recovering after many years and even reports of those who spontaneously heal for no apparent reason, these are admittedly rare. However, one rule of thumb seems to remain somewhat reliable ? if you acquire POTS during your teenage years you are likely to ?outgrow? it within a few years, but those who acquire it later in life do not share the same optimistic appraisal of the situation. But every case and every human is physiologically different, so each individual case can ultimately write its own conclusion. The good news is, many of those who are afflicted for life manage to get control of their symptoms to the point of almost being human again and can live long and happy lives, albeit in a somewhat diminished capacity. Never give up.
  12. Very interesting topic. I was diagnosed with the Epstein Barr virus back in 1993, but I managed to get the monthly outbreaks under control after a few years. I developed POTS two years ago right after a bout of bronchial pneumonia. My father got lymphoma at 46 and fought it for 18 years. I?m 46 Thanks, Sarah, for starting the topic, and thanks, caterpilly for the suggestions.
  13. As with CPR, you want your head tilted back to open the airway completely. The closer your chin is to your chest the more you close your airway. A neck pillow (or some sort) helps to keep your head and chest in proper alignment. That may not be the case in this situation, but it could contribute.
  14. I find it perplexing that her doctor would prescribe a 10-day supply of a medication that many would agree takes 10 days to two weeks, sometimes longer, to take full effect. It is possible that she had not been on it long enough, although some minor improvement should have been noticed, especially since she was on 0.1mg and quite often 0.05mg is prescribed to start. It?s also important to remember that for Florinef (Fludrocortisone) to work, it must be accompanied by fluids and salt loading, otherwise there is insufficient salt to retain in the first place.
  15. Have you tried placing a small or tubular pillow behind your neck when you lie flat? Perhaps there?s some esophageal constriction going on.
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