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Everything posted by Simmy

  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.
  16. Hi Ocean and welcome, First, allow me to thank you for caring for someone who herself must be thanked for her service. The one item that struck me was her doctor having her sit and stand, and blurt out, ?No you do not have this.? His earlier ?rubbish? statement doesn?t give me warm fuzzies about his diagnosis. Prior to any ?poor man?s tilt test? the patient must be supine and relaxed for 15 minutes before assuming an inclined posture, which includes sitting and standing. And by the way, what were her sitting and standing heart rates? Did he bother to mention them? While many of her symptoms sound familiar to us (actually, a great many) there?s no way for us to know whether or not she also has some form of dysautonomia. The good news is it?s quite easy to do the test yourself, at home, to at least potentially eliminate it as a possibility. As I mentioned, have her lie down for fifteen relaxed minutes and take her pulse. Then have her stand up straight (sitting is irrelevant at this stage) leaning against a wall if necessary, and check her pulse again and again, every minute, for up to ten minutes or as long as she can stand it. If at any time during the test her heart rate increases by more than 28bpm (some say 30, others 32) then she might have POTS. How quickly the heart rate accelerates upon standing can also point to distinct versions of the syndrome. Blood pressure readings taken during the test can further distinguish varieties. The key is to see trends in heart rate, up and down, which become clear with a chest-strap type heart rate monitor watch. It can show, in real-time, how posture affects heart rate so if she has one or can borrow one that would be helpful. Good luck and please keep us apprised.
  17. Page 7 ? Benefit Termination http://www.socialsecurity.gov/policy/docs/statcomps/di_asr/2009/background.pdf ?How often a case is reviewed depends on the severity of the impairment and the likelihood of improvement. The frequency can range from 6 months to 7 years. Here are general guidelines for reviews. ? Improvement expected?If medical improvement can be predicted when benefits start, the first review will be 6 to 18 months later. ? Improvement possible?If medical improvement is possible but cannot be predicted, the case will be reviewed about every 3 years. ? Improvement not expected?If medical improvement is not likely, the case will be reviewed about once every 5 to 7 years.? Noreen ? I agree. Age must be included as a consideration. I?m 46 and have paid my taxes for 26 years, so that might have made the decision to place me in the latter category easier. Caterpilly ? Sounds like you have doctors who support your case and yes, even if heart rate doesn?t always exceed the POTS benchmark the other symptoms can still be, literally, disabling. Your declining work history will also show you had intent to work, but your illness stopped you. The problem with this syndrome is its relative invisibility and therefore it is difficult to prove. In my case the massive heart rate jumps can be easily demonstrated to a judge, but I worry for others who suffer as much as I do, if not more, but don?t have that one visible piece of evidence to produce. I hope you find a way to ?show? it. Brye ? Thanks. I know what you mean. I?m now officially decrepit, but it?s a job and someone has to do it
  18. Thanks everyone. It?s been a long, excruciating process, but worth it in the end. Dana ? While you may not qualify for SSDI, you may still qualify for SSI, depending on your household income, regardless of your work history. Check out ssa.gov for more information. Caterpilly ? You?re certainly welcome to copy my video and show it to the judge (just search ?simbofats? on YouTube) but I?d think it would better bring the point home if you made your own, but I doubt you?ll need any evidence but your own body at the hearing. If your symptoms are anything like mine, when you stand up your heart rate will increase by at least 30 or 40bpm and you?ll start sweating within a minute or two. All you?ll need to do is come to the hearing wearing a chest-strap type heart rate monitor watch and show the judge your heart rate while you?re lying down or sitting reclined with legs elevated (60bpm?). Then stand up and read out loud your heart rate increasing to 90, 100, 110? the more the better, as long as you can stand it. If you pass out, you win! The reason I recommend reading the numbers out loud, even if the judge is looking directly at your watch, is for two reasons: first, everyone else in the room will hear it too and their reactions will work in your favor; secondly, we know that any exertion increases our heart rates further, even talking. Is this cheating? I don?t think so. Are there rules specifically stating you cannot do that? Anyway, once you?ve definitively demonstrated your ?arrhythmia? you can quote the criteria I posted. That should be a slam-dunk, lymphoma or not. As far as updates once it's approved, that depends on the category into which they place you - one of three. The first one (and I don't remember the exact names) is "recovery expected" and they re-evaluate your condition after 6-12 months. The second is "Recovery possible" and I believe they re-evaluate you after 1-3 years. The third is "recovery not expected" and re-evaluation occurs after 5-7 years. I can't say why, but I was lucky enough to be placed into the latter category, so they won't bother me for a long time and I can concentrate on getting better so I can contact them instead and tell them I'm back to work, when I'm ready. Maggie ? My pleasure. I hope it helps your case.
  19. While the logic of the theory may be sound, in actuality I would think the pain and discomfort suffered for hours and perhaps days thereafter due to low blood volume in someone that already suffers from blood pooling would far outweigh the potential benefits of smoother blood flow once volume returns to normal. Since our problem is with gravity, lessening the volume of the very liquid we lack would be counterproductive and likely exacerbate symptoms, which is why Florinef, Cymbalta, or DDAVP, which boost blood volume, are prescribed to many of us. Again, in the long run it might indeed be beneficial, but I don?t think for us.
  20. I decided to get one a couple of months ago. My doctor wrote a prescription for a lightweight, reclining, leg-elevating, collapsible wheelchair and added the proper Dx code. Since I was unable to find one from the suppliers in my insurance network I had to go out of network so they?ll only reimburse 80% of the cost, after my deductible. I have no idea how it works with Medicaid though. From my research I learned that all but one reclining wheelchairs on the market have the two ?reclining? handles behind the chair so only someone else can release them for you to recline or incline, but all you need is a screwdriver to unscrew them from the rear and reattach them to the side of the chair where you can squeeze them yourself. I got the Karman Ultra Light reclining wheelchair with leg elevators and head rest and it has made an enormous difference. I decided on this model because it?s only 37 lbs. so I can lift it in and out of my car trunk with ease, it folds and unfolds quickly, it reclines to almost completely flat (and even comes with two little wheelie-bars to prevent tipping) and it has two pneumatic cylinders in the rear that raise the seatback on their own, so you don?t have to pull the back while squeezing the two triggers, you just squeeze and sit up. The leg elevators are great too. With just a small amount of side pressure from your feet you can raise and lock them both into any position without having to lean forward and grab them. And the headrest comes with a little foam pillow that attaches with Velcro. Only one problem with the chair? it?s about $1,000.
  21. 120/80 or 110/70 sounds good. It's important to remember that no two people will feel identical at the same blood pressure, some feel absolutely normal at 90/60 and I know some who walk around with a 160/100 and feel fine, but generally 90/60 is a little low (especially the 90 systolic). Pulse pressure should be around 40 on average, so again 25 is a little low, but more importantly is what happens when you stand up from a supine position? How does your blood pressure react, after one minute of standing, two, etc.?
  22. Hi Chuck and welcome. You?ve come to the right place. I too was just approved for SSDI. As tearose said, this is money we deserve because we?ve paid our dues to the ?insurance company? and we now qualify for benefits under their own rules. No shame, no embarrassment, we?ve earned it after years of hard work followed by a devastating diagnosis. As for outbursts you cannot control and sometimes cannot even recall, that is part of POTS too. First, you?ve been angry for a very long time and justifiably so ? you?ve not only been dealing with this illness but also fighting the battle for benefits when it should have been uncomplicated. You won! You?re happy about that, but still have a lot of anger and now that that part is over, you want to release some of your frustration. That is a normal reaction, my friend. Putting social security aside, remember that, due to POTS, your brain does not get the required amount of oxygen, which affects how you think, remember and react to stimuli. I cannot count the number of times I?ve smashed my fist into the wall or a cabinet (or stopped myself at the last second) because I had to make a sandwich on the floor, or I collapsed at the top of the staircase, or couldn?t remember a commonplace word during conversation. Give yourself a break. This is not you, it?s POTS. Please remind your wife (at a calm moment, not during stress) that your anger is directed at your illness and not at her, but that sometimes the oxygen-deprivation makes it difficult to control your emotions and impulses. We understand. I hope she will too.
  23. I got word last week that I have finally been approved for Social Security Disability Insurance benefits, in the second ?reconsideration? stage. Now I can concentrate on getting better, instead of trying to prove my illness. While I cannot be certain why I was approved at this second, nearly identical stage to the first, it was most likely due to one or both of the recent submittals. First, I made a copy of the video many of you have seen, ?POTS on a really bad day? and sent it to my lawyer, who forwarded it to social security. Of course there?s no way of knowing if anyone there actually watched it. But the second ?piece of evidence? submitted was probably what sealed the deal. About a year ago I purchased a device called a ?SmartSync Heart Rate Data Logger? made by Oregon Scientific, which is tuned to receive the signal sent by Polar and other heart rate chest straps, it records the heart rates in real-time and then displays and prints out the graph after hooking it up to a computer. My lawyer asked me to record my supine-to-standing heart rates, 3 times a day at the same time, for a week. Every one of the 21 recordings showed a rise in heart rate of more than 28bpm, some rising as high as 78. He then submitted the printouts to social security, along with an explanation of why this qualifies me for disability. I am sharing it below, in hopes that some of you here can benefit from it and perhaps get to keep the other 25% of your retroactive payments, should you decide to go it alone. ?The claimant purchased a heart monitor to monitor when he is having an episode of tachycardia due to postural orthostatic tachycardia syndrome (POTS). The enclosed records show that every time he stood up, his heart rate increased on the average by 52 bpm. It is important to note that this change in heart rate is not related to exertional activity. The mere act of changing his posture and standing up causes his heart rate to change not only significantly, but also rapidly. On the average, he reached his peak heart rate (which reached as high as 149 bpm from the enclosed records) in as little as 17 seconds. To emphasize the point, my client recorded one episode and the video clearly showed the speed at which his heart rate changed.? ?As my client described it, when he experiences a tachycardia episode, he feels like he just ran a marathon. He can suffer from symptoms of headache, dizziness, light-headedness, sensations of near syncope and nausea due to the rapid change in his heart rate.? ?Under the Listing of Impairments in 20 CFR ? 404, Appendix I to Subpart P, 4.05 Recurrent Arrhythmias, it states that ?uncontrolled, recurrent episodes of cardiac syncope or near syncope? is a disabling impairment. An arrhythmia is defined as ?a change in the regular beat of the heart,? such as tachycardia. Recurrent is defined as findings occurring at least 3 times in a 12 month period. See 20 CFR ? 404, Appendix I to Subpart P, 4.00(F) and 4.00(A)(3)©. According to the records enclosed, my client suffers from an arrhythmia every time he stands up. These findings alone refute the prior decision that my client could return to work. This is sufficient to establish that my client meets the listing for a recurrent arrhythmia.? ?Moreover, my client could not work at any job, unless they allowed him to work while he was lying down and there was almost no requirement of standing or walking. These types of limitations so significantly erode the occupational base at any exertional level, that my client is disabled under the Medical-Vocational Guidelines.? ?For all of the above reasons, we argue that my client should be found disabled. Thank you for your consideration.? Harrumph!
  24. My symptoms have improved dramatically. I used to be able to stand for only one or two minutes before needing to go horizontal. Now I?m up to almost three I estimate that I?m upright for a total of less than one hour a day, which means I spend 95% of my life either in bed, on the couch, or on the floor. In my case there are two ways of looking at it ? I either limit myself to only a couple of minutes of standing at a time to prevent exhaustion (and headache, dizziness, etc.), or I stand longer and then suffer the consequences and can?t get off the couch for hours. I consider myself very fortunate to have POTS in 2010. I can?t begin to imagine how bored out of my mind I would be without the laptop and TV.
  25. We all need to calmly and politely form a line to punch her in the mouth. While my cardiologist/PotsDoc is great and works with me to determine the best course of action, his nurse practitioners still have a lot to learn from him, but they?re nowhere near as reprehensible and disrespectful as yours seems to have been. It?s good you?re getting a copy of your records. Keep copies of everything. Yes, 37bpm is most definitely bradycardic (unless you?re a well-tuned athlete) and 140 is well into tachycardia. One must remember that the word ?Orthostatic? in POTS means ?standing without movement?. Is it possible the moron thought you were running a marathon when your heart monitor registered 140? I don?t know what your blood pressure readings actually are, other than ?pretty low? and ?drops a little?, numbers would help a lot. Do you have a BP monitor at home? Anyway, depending on the dosages, Florinef can sometimes spike your blood pressure, especially while lying down, so please watch out for that.
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