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brainchild

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  1. I am newly diagnosed with POTS. My cardiologist recommended compression stockings but his office won't prescribe them, lets the PCP do that. I basically diagnosed myself and took myself to the cardiologist before seeing my PCP. I have an appointment with PCP this coming week and hoping that he will script the compression stockings. I'm the 5th POTS patient my cardiologist has seen - not sure yet on the PCP end. So, I'm aiming to go to this appointment as prepared as possible, expecting that my doctor won't be familiar with POTS and I'll get better results if I make reasoned suggestions. I've got multiple articles printed out for him as resources, in case this is new for him. I purchased a pair of waist high, footless stockings from Amazon (Discount Surgical, Absolute Support) at 20-30mmHg. I have worn them for a few days and they're ok. Trouble is, we're heading into consistent 80 degree weather and these things are just torture in the heat. I don't have apparent blood pooling in my legs. I haven't had any further diagnostics to characterize my POTS - so all I know is that I meet the heart rate increase with symptoms criteria. My primary symptoms currently are: widespread pain (especially in the thigh), lightheadedness, cognitive impairments, poor sleep, exercise intolerance, post exertional malaise, wide swings in body temp, inappropriate sweating. I also have a history of low blood pressure - under 90 systolic. My main questions are: 1. Do people without blood pooling in their legs find benefit from wearing compression stockings? Is this a diagnostic marker for wearing them or do all POTS patients seem to benefit? The literature seems to suggest for all POTSies. 2. Has anyone tried and found benefit from compression shorts, waist high, knee high? As in, do I need the lower leg compression if I don't have blood pooling? I'm hoping that I'll get benefit from the support of the veins in my thighs and lower abdomen. I'm hoping to have a variety of effective options as we get 9 months of 90 degree weather here. I'm hoping to get some guidance - I understand that this likely varies per individual. 3. Any suggestion on fitting? I know that I will ideally have a professional fitting. I measured myself and bought according to the size chart but I can't tell if the ones I have are too big or too small. There is plenty of room in the ankle cuff and the waist (they lie flat on the skin, but there's tons of room to stretch) but the crotch keeps riding down. I don't think I'm too terribly odd a shape or proportion. 4. If my doctor is a newbie to POTS, any recommendation on 20-30mmgHg versus 30-40mmHg? I've seen both in the literature. In addition to the compression stockings, I've elevated the head of my bed, am eating 5.5gm salt/day, drinking 3L per day, am on low dose propranolol, doing supine cardio and strength training within my tolerance zone, I eat a whole foods diet, take magnesium and vit D. I started most of these at about the same time and am feeling some improvement - so difficult to tell if what I'm doing for compression is making an impact. I did search and read through several pages of postings on compression stockings. I appreciate any help! Thank you!
  2. Hi RJS, I have had severe pain reactions to foods - so not the same type of reactions that you are having but a reaction to food. I've been diagnosed with fibromyalgia (came before POTS diagnosis). You've gotten farther than I did with an allergist. I was told that they only dealt with anaphylactic type reactions. I was so devastated because food seemed to be a primary trigger for me and the pain was unbearable. I spent two years eating only 6 foods (grass fed beef, carrot, broccoli, cauliflower, zucchini, bananas). I feel your pain and you have my empathy. My thought is that the ANS is getting triggered - just like sound or light or other things are triggers for some people. I second the suggestions made: test for MCAS, keep a food diary. I suggest trying whole food versions of what you are eating now that is processed. Can you eat plain cooked beef? Can you tolerate spices that you add yourself? Are you able to mix up the foods that you can eat - like making pancakes or crutons with the muffin recipe or having steak um with pasta, or cheesy muffins? Try mixing things up and see if its an ingredient issue or the fact that your mind is locked onto certain foods and gets triggered with anything else. If it's not an ingredient issue but mixing them up triggers you, then look into ways to calm the CNS and decrease reactions to triggers. If you can mix things up, then slowly add small amounts of new foods - preferably whole foods, like vegetables or fruits. Have you found ways to manage your POTS symptoms? What caused the anaphylactic reaction that you had in the past? I'd look at that and see if there is any connection. I am a health care practitioner and have worked with patients who have food as a trigger but is not an actual allergen for them. Things can get better. It does take time and patience. My own food reactions are much better now also - years later. I felt painted into a corner and so limited. I never ate out and had my own foods for holidays as what was being served was not on my ok foods list. I kept to a limited diet and took all kinds of supplements - hard to say what made things change for me. If it's not an actual allergy for you, then you are painted into a corner too and need to find the tiny bits of wiggle room that exist. Change up how you ingest those limited ingredients and then slowly add in new foods in tiny amounts. If it's a POTS related reaction, then it may change with time. Good luck and keep us posted as to how you are doing.
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