Bigskyfam Posted November 20, 2013 Report Share Posted November 20, 2013 I've read about subtypes? Do you guys have a subtype? Is there more specific testing to determine it? I see treatment plans can vary between the subtypes. I only had the tilt table test. Closest autonomic clinic is states away. Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted November 20, 2013 Report Share Posted November 20, 2013 I have hypovolemic POTS, which just means that my blood volume and plasma decrease with postural changes. A lot of people on here have hyper POTS. For my subtype, I had the hemodynamic tilt test, which basically just looks at what your blood is doing when you are in different positions. With me, when I sit up/stand my blood volume and plasma volume go down ~50%, and pools in my legs and abdomen. For this subtype the treatment doesn't really change much. Drink tons of water, lots of salt intake, and meds to treat symptoms (e.g., Beta blockers for tachycardia, etc.) I know how you feel about the autonomic clinics, I had to drive a few hours to get to the nearest autonomic clinic and have all these tests done.Best Wishes,Fainting Goat Quote Link to comment Share on other sites More sharing options...
lejones1 Posted November 20, 2013 Report Share Posted November 20, 2013 There is more specific testing for subtyping and I would definitely encourage you to pursue it. The three big subtypes I think of are hyper, neuropathic, and hypovolemic. Then I guess there's also the mechanism behind EDS-related POTS (stretchy veins? May be wrong about that.) A lot of the testing does require special equipment that they'd only have at a clinic but not all. I have neuropathic POTS, which was diagnosed with a QSART test and punch skin biopsies. You can also have a thermoregulatory sweat test. These all test for small fiber neuropathy (autonomic neuropathy is a subtype of this). However normal test results don't necessarily rule out neuropathic POTS. My biopsies were normal but QSART was abnormal. Many people with neuropathic POTS also have sensory SFN, which causes burning/tingling, numbness, and/or pain, usually starting in the feet and hands, so that could be a clue. Neuropathic POTS is associated with immune-related causes - autoimmune or post-viral. You may be able to get a non-POTS neurologist to run some of these tests on you if they're otherwise familiar with small fiber neuropathy (since it's quite common with diabetes).Faintinggoat gives a good explanation of hypovolemia. I've never been fully tested for that, but I did have my aldosterone level tested and it was extremely low. Aldosterone is the hormone that makes your body retain salt and, by extension, water. A very low level suggests chronic dehydration if not hypovolemia. This is a simple blood test you could get any doctor to run.I don't know much about hyper POTS because I've never been tested for it, but I know many people on here have so hopefully you'll get some good answers!Finding the mechanisms behind your POTS should definitely help with a treatment plan. I was put on a lot of beta blockers when I was first diagnosed and they made me feel AWFUL. At the time I was accused of being stubborn and dramatic by my doctors, but after seeing a POTS specialist I found out those were absolutely the wrong thing for my case, and I should've been tried on Florinef or Midodrine instead. So further testing can definitely help save you some frustration! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 21, 2013 Author Report Share Posted November 21, 2013 Guys! Thanks! Great thoughts. Thorough explanations! I meet with cardiologist tomorrow and will ask about labs. Ive only had cortisol drawn and 24 hr urine sodium results pending. Need to hear from a hyper now. would love to pursue testing. Closest is a plane ride or 2 days or more of driving. I live in Montana. Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted November 21, 2013 Report Share Posted November 21, 2013 Maybe some of the testing can be pursued by a neurologist or your cardiologist in Montana. That is quite a hike a way (now I feel bad for complaining about my several hour drive lol!) Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 21, 2013 Author Report Share Posted November 21, 2013 I'm finding a ride down the road is too far somedays Quote Link to comment Share on other sites More sharing options...
Freaked Posted November 21, 2013 Report Share Posted November 21, 2013 Wow these tests are really interesting! I'm almost sure I have hyper POTS though I've never actually been tested, but I really would like to know if I have a hypovolemia problem. Must ask the doc about an aldosterone test! Quote Link to comment Share on other sites More sharing options...
Faintinggoat Posted November 21, 2013 Report Share Posted November 21, 2013 lol bigskyfam, I completely understand that. Driving to my doctors across town generally takes most of the energy out of me, let along a trip states away. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted November 21, 2013 Author Report Share Posted November 21, 2013 Doc visit today? A wash! I asked about subtypes. No go for tests. Given the standard pots lifestyle protocol and given a script for nadalol. I'm going to wait on that. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 12, 2014 Author Report Share Posted February 12, 2014 Bump for the new members Quote Link to comment Share on other sites More sharing options...
lulusoccer Posted February 13, 2014 Report Share Posted February 13, 2014 I also have Hypovolemic POTs. I was diagnosed at the Vanderbilt Medical Center (Was in for a week for research). They performed a Total Blood Volume Test (It's a nuclear medicine test). Which actually if you live near a hospital that has a nuclear medicine department your GP should be able to order the test for you! I think it does help to know your subtype because treatment can be tailored some to fit you better. For instance, if I had hyper POTs I may not want to be on BP increasing meds because I could already have high blood pressure. However, since I have low BP and low blood volume I'm on Florinef, Midodrine, and Propranolol to help with my POTs. As well as lots of salt and fluids! Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 14, 2014 Author Report Share Posted February 14, 2014 Thx lulu! I'm looking into tests at my hofpitsl even if it's process by elimination. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted February 14, 2014 Author Report Share Posted February 14, 2014 I followed your vandy trip. So beneficial to us and you too I hope Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 Generally speaking, the "hypers" I know tend to have at least episodes of high blood pressure. The adrenal glands over react and the resulting "fight or flight" hormones cause a raise in blood pressure. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 11, 2014 Report Share Posted March 11, 2014 i'm so confused about hyperadrenergic pots. I watched a video by Dr Blair Grubb about it. He said you should suspect this type when a person has very flushed and hot skin all of a sudden with possible hives and a sudden increase in heart rate and dramatic drop in blood pressure. But other places, I have seen ppl here mention high blood pressure. Does anyone know which it is?June Quote Link to comment Share on other sites More sharing options...
kayjay Posted March 11, 2014 Report Share Posted March 11, 2014 Mayo would not agree with that. Dr. grubb may have been talking about mast cell. Sweating excessively, high blood pressure and high catecholamines are hallmarks of hyper. You really need a proper blood test. Quote Link to comment Share on other sites More sharing options...
JuneFlower Posted March 11, 2014 Report Share Posted March 11, 2014 ok kJay - that's what I thought. Quote Link to comment Share on other sites More sharing options...
Bigskyfam Posted March 12, 2014 Author Report Share Posted March 12, 2014 I'd love a norepinephrine test! Hoping to get that as it is offered here. Docs here don't know how to interpret so they are hesitant to order Quote Link to comment Share on other sites More sharing options...
blueskies Posted March 13, 2014 Report Share Posted March 13, 2014 i'm so confused about hyperadrenergic pots. I watched a video by Dr Blair Grubb about it. He said you should suspect this type when a person has very flushed and hot skin all of a sudden with possible hives and a sudden increase in heart rate and dramatic drop in blood pressure. But other places, I have seen ppl here mention high blood pressure. Does anyone know which it is? June Hi June and others, I get all those things except my blood pressure goes up. It's often high, sometimes quite high but not getting dangerous/life threatening readings. Occasionally it's on the low side now, but not by much. blue Quote Link to comment Share on other sites More sharing options...
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