Kris4444 Posted February 12, 2013 Report Share Posted February 12, 2013 My Neuro at Mayo refers to my diagnosis as a "hyperadrenergic state" or hypersympatheic state, he uses them interchangably. On my summary the diagnosis code is for Pots. I called and spoke to someone in neuro about this and they said they use the code that best fits the symptoms for billing purposes but it doesn't necesarrily mean that is my diagnosis. I don't think there is a code for hyper pots?What are the criteria for hyper pots? I have the high NE and NME and high blood pressure. I passed my TTT.Thanks. Quote Link to comment Share on other sites More sharing options...
Altruism Posted February 12, 2013 Report Share Posted February 12, 2013 Hyper POTS is a POTS subtype, however, there are POTS patient who have hyperdrenergic component without being really hyper POTS. Like me - I have high NE but my bp does not increase when I stand up. I hope it makes sense. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 12, 2013 Author Report Share Posted February 12, 2013 My bp does increase. I need to look over the test results again to better understand. Seems like it goes in one ear and right out the other. Thank you for the response. Quote Link to comment Share on other sites More sharing options...
peregrine Posted February 13, 2013 Report Share Posted February 13, 2013 By passed your TTT - what do you mean? Did you have the >30bpm heart rate increase, any decrease in blood pressure, etc? It sounds like (given the high NE and high BP) you might be hyperPOTS; given that you're already on clonidine, it sounds like you have a good treatment plan in that direction. Being hyperPOTS or neuroPOTS or whatever is not a be-all and end-all of treatment (if only it were!) - the experts can't even decide on firm categories or treatment plans for each, other than "if you pool, try these things first; if you don't seem to pool, try this instead" and it does depend a lot on who you see. But knowing that you have those criteria is helpful for you going forward in terms of which treatments to try first, which it sounds like Mayo did by starting you on clonidine. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 13, 2013 Author Report Share Posted February 13, 2013 TTT was normal. My biggest issues are that my gut doesn't work (severe colonic inertia) and I have heat/cold intolerance and exercise intolerance. I was a professional horse trainer. I was very fit and active. I had to let that part of my life go. Just walking today caused a massive flushing attack, headache, high bp and excessive sweating. Quote Link to comment Share on other sites More sharing options...
peregrine Posted February 13, 2013 Report Share Posted February 13, 2013 Hunh - TTT was normal. You describe flushing - has anyone spoken with you about mast cell issues (e.g. mast cell activation syndrome)? Flushing is a big heads up for those. Quote Link to comment Share on other sites More sharing options...
Kris4444 Posted February 13, 2013 Author Report Share Posted February 13, 2013 Yes it was brought up at both Johns Hopkins and Mayo. The vascular doctor at Mayo ordered a histamine test and was told that they couldn't run it at that time...weird. Tryptase was normal.I definately feel there is mast cell involvement but again, don't know who to turn to. My rhuemy is looking into this for me. I guess I need an immunologist but need to find one who is familiar with pots. My rheumy is looking into EDS too since they all seem to go hand in hand. I have always been hypermobile as are my kids. Never gave it a second thought. We know I have a connective tissue disease, at first they said scleroderma, that has now been changed to UCTD. I was diagnosed with fibro at 19 after not recovering from a car accident. I have herniated discs in my cervical and lumbar spine and have had surgery on lumbar spine. DDD started really early, spinal stenosis, loss of lordosis in my cervical spine. The list goes on and on. Tons of inflammation in different organs, thyroid nodules, chronic bladder inflammation, non functioning colon...ugh Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted February 13, 2013 Report Share Posted February 13, 2013 the difference would be a postural hyperadrenergic state although in POTS there can be exaggerated responses to stressful stimuli Quote Link to comment Share on other sites More sharing options...
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