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About kds

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    Bloomington, Indiana
  • Interests
    Hyperandrenergic Autonomic Dysfunction, POTS, Orthostatic hypertension, Small Fiber Neuropathy, Erythremelalgia, Raynaud's Syndrome, hyperhidrosis, Ehlers-Danlos Syndrome and other HDCT, MCAS, Myofascial Pain syndrome, Thoracic Outlet Syndrome, Upper Cervical Instability
  1. Thanks. I think I'm going to try the Omron 10, despite information sharing concerns.
  2. Do any of you have recommendations regarding automated blood pressure cuffs that allow the automatic recording of data? I had been using an old, wired Withings monitor and importing the data to iBP, a well designed but now defunct iPhone app. Nokia has purchased Withings and broken the connection to iBP and also my ability to use my old wired cuff. I contacted Nokia about issues with their app and the iBP connection in early January. None of Nokia's app issues have been resolved in the interim, and in February my iPhone 7 & the Nokia app stopped recognizing my cuff as a supported device. I need a replacement soon, and know that I am much less reliable about tracking data that I have to enter manually. I do not like the Nokia app's display and limited export features, but it does allow me to enter notes about the circumstances of measurements as I go - i.e tracking medications and supine v. seated v. standing position. Does any one have experience with iQuardio or Omron automated cuffs and associated apps? Do these apps allow notes on individual measurements? How easy is it to export & share data with one's doctors? On-line reviews of all of these cuffs suggest that there are problems with sustained app support, so I'm trying to decide whether to switch brands or gamble on Nokia again because Apple seems to be invested in supporting its devices. Note: I have hyperandrenergic autonomic dysfunction, and do not usually have trouble getting readings due to low blood pressure (though lability and arrhythmia are another matter).
  3. The Sigvaris doff'n donner can make getting hose on easier on the hands (though not for pantyhose), or for someone else to help you. It takes practice (15-20 tries) and close watching of web YouTube videos. An added benefit (not) is that you can pay $100 for something that looks like a giant phallus do decorate your bathroom. My ordeals with hose and associated gear have my daughter thinking about medical product design as a career. For the cost, one would think these things could be a little less ugly.
  4. After much trial and error, I wear jobst 30-40mmhg toeless thigh highs, iniji toe socks (med weight, although they make compression socks), and either Skins bike shorts, spanx, or Lucy perfect core yoga pants or leggings. I need compression all the way up, but it is easier on my EDS body to put it on in pieces. The pieces are not cheap, but I feel much better - and my BP responses are much more normal - with them. I have found jobst far more durable than other brands of compression hose, and skins more durable than spanx. Lucy pants are pricey but invulnerable - mine still look relatively new after multiple wearings per weak for two years. Many of us pool in our abdomens as well as legs, and have found OTC compression garments better than abdominal binders. Bike shorts alone wouldn't be enough for me, but something is better than nothing.
  5. I've been having surges like this for a few years now; I have no good answers about what to do. If I didn't have allergic and asthma type issues suggestive of hyperactive mast cells, I'd be experimenting with beta blockers. In case it helps anyone, Vanderbilt gave me a differential diagnosis list that includes MCAS, baroreflex dysfunction, and carotid body dysfunction, and recommended clonidine. I'm in the process of trying to find someone I trust to oversee it, and to provide the 24 hour BP monitoring I'd need to judge its effectiveness.
  6. Hi, as I have posted elsewhere, I have been diagnosed with orthostatic hypertension and tachycardia at Vanderbilt, but I am having trouble finding a local doctor I trust to help manage treatment. I have a local cardio, but I'm out of his scope of practice. He only took me on after I asked him if there were other local doctors who would be more helpful if this laned me in the ER. Is there any one who sees a cardiologist in Indianapolis, or any other specialist who might help with volatile hypertension? Thanks, kds
  7. Hi all, has any one purchased an ambulatory 24 hour blood pressure monitor, or had experience with one that seemed decent? None of my local cardiologists offers the test. My blood pressure is so volatile that I think it will be difficult to assess medication effectiveness without it. Because I will likely need ongoing monitoring, it will probably be more cost effective to purchase my own monitor than have to find someone to drive me to our nearest metropolitan every time I need it. I have a withings cuff that I use with my iPhone, but it is not genuinely ambulatory (fail rate of about 60% when I am standing) and it is no good at night. Suggestions for cuffs or suppliers would be much appreciated. My back story: I was diagnosed at Vandy in late 2012 with orthostatic hypertension and tachycardia, with 1) baroreflex dysfunction 2) MCAS 3) carotid body dysfunction as the differential diagnoses for the underlying cause. I have EDS related neck problems as well as probable MCAS, so all three of these are still on the table. Vandy recommended clonidine, and against beta blockers because of the MCAS. My EDS savvy cardiologist at Hopkins suggested I give MCAS meds, diet and exercise a trial, because he finds clonidine very tricky, particularly with regard to rebound hypertension, and he'd want me local to him with his cell phone were I to try it. The behavior modification helped, but an injury this winter has made it hard to get enough cardio, and spending three weeks near Hopkins is not an option. I've persuaded a very reluctant local cardio to take me on as a patient so I have someone familiar with my issues if I have to go to the ER. He thinks 24 hour monitoring is a good idea, but has left it to me to solve the problem of how to obtain it.
  8. I voted that I put in more than 30 min a day at mild to moderate, but most of that is pretty mild and spaced out over the day. I spend the most time on restorative and stability focused yoga/Pilates, and walking as much as I am able. I have found my autonomic symptoms are helped the most by short bursts of interval training (on an elliptical or recumbent bike) that get my heartrate to 90% of max for a total of 4 minutes. This usually requires 8-15 minutes of total exercise, 4-5 days per week. When I try to do more, I injure myself and end up relapsing.
  9. I have spikes that high (or higher) pretty frequently, though it usually goes down to 80-90 if I lie down. Exercise also helps mine, when I can tolerate it; not moving is not a long tem solution. I am still searching for advice on better management, so welcome any suggestions.
  10. Dr. Anne Maitland in Tarrytown / Westchester NY is amazing. She trained with Maria Castells in Boston, and is familiar with the EDS/MCAS/dysautonomia connection.
  11. Just realized it has been over a year since I had posted and that my signature was out if date. I have been more thoroughly diagnosed in the past 18 months, and for a while seemed to be improving with exercise. But things have been getting bad again this winter.
  12. I have reactions similar to blue's, though not quite so many dietary triggers. I've been told it is probably MCAS, antihistamines, singulair and chromolyn sodium do help me some with the wide spread flushing of face and chest (usually bilateral but sometimes just on right). I'm not sure of their value for my main current complaints, however, because it has been over a year since I last tried going off of them. Your post was timely for me, because I was just about to post about burning pain in the extremities, I believe associated with norepinephrine surges. This pain is particularly bad if I am awakened at the wrong time in my morning sleep cycle, when repeated electrical shocks of adrenal surges bring on excruciating burning/aching pain (possibly vasoconstrictive) in my hands and feet, along with BP and HR spikes, nausea, etc. The pain usually subsides a bit if hyperhydrosis sets in. I can also get some relief by exercising hard enough to sweat for even a few minutes, although this last is a challenge when my BP and heartrate are fluctuating and because of EDS injuries. The adrenal surges and corresponding vaso motor changes & pain in my hands and feet are also triggered by being upright and still, and by stress, but not usually by diet. Of late these have been accompanied by labile but potentially dangerous hypertension. I'm currently trying low dose naltrexone, but my dose is too low to know if it does much good. Clonidine is next on my list if I can find a doctor I trust to oversee it; I read somewhere that it is not compatible with LDN. I'd welcome other thoughts or suggestions. Thanks and good luck, KDS
  13. I just had a consult at Vanderbilt, where the doctor explained that POTS is not really a diagnosis, as in a distinct condition with a clear treatment protocol. Rather, POTS is a symptom of autonomic dysfunction (I.e. dysautonomia) -- which can have many causes and take many forms. To treat the POTS symptoms, one ought to learn as much as possible about the underlying issue in the individual patient. My symptoms sound a lot like yours, and Vanderbilt's testing confirmed that my blood pressure goes UP when I'm upright. I have yet to hear back from them on what they think the underlying issue is, and the answer may well be that they do not know. Thus far, I seem to belong to the EDS/MCAS/hyperPOTS subtype that has had a lot of discussion on these boards.
  14. My doctor ordered a 24 hour monitor because of arrhythmias, and we ended up changing it to a 48 continuous holter monitor so that we could compare w/ & w/out compression hose. The cardiologists staff thought this was silly, but it turns out that the act of removing the hose (and keeping a close log of such things) demonstrated just how wacky things get for me when I experience pooling. I went into a short run of v-tach right after taking them off, and this data made even my non-dysautonomia specialist docs pay attention. I also followed advice found elsewhere on the forum and had the office send me my full results, which are technically "normal," but full of things I want to ask the dysautonomia specialist about when finally get there. My log was so detailed it annoyed the doctor who had to read the test, but it's been quite useful in helping me distinguish scary sensations that aren't dangerous from those that are.
  15. Thanks for the advice. I had my right greater saphenous vein laser ablated in 2005, at age 35 & before things really went south & I ended up with all my other diagnoses. Ablation definitely helped for a while. My right leg still looks better than the left - no snake river over the foot and ankle, and the toes don't turn black as on the left. But the foot and ankle appear to swell just as much as the left if I don't use compression. My cardiologist opposes another ablation, and I've not talked to a vein specialist since my EDS & other diagnoses. My questions about the varicosities tend to get buried amidst all my other issues, especially because the one's they can see don't look that bad (as these things go), and most of the docs I've talked to think of this as a cosmetic issue. Yet there's a clear link between my arrhythmias, worst potsy symptoms, and pooling. I'll look into the lemon rinds, quercetin and rutin. My veins seem to be rapidly getting worse all over, and I would love to slow the process.
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