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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
  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 ma
  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 standi
  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 i
  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 us
  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 advo
  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 y
  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 w
  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 sympto
  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 m
  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 r
  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 bene
  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 y
  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 benefit
  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 w
  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 fo
  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?
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