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lulusoccer

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About lulusoccer

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    Advanced Member
  • Birthday 08/10/1987

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    Female
  • Location
    Indiana
  • Interests
    Video Games/Working Out/Couponing =)

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  1. I'd honestly recommend going to the various workout centers in your community and visiting them. That way you can see what the gym has to offer and get information on how much each of them costs. I know where I live the memberships costs anywhere from $10 (Basic, just gym, no classes/pool)-$40/mo depending on the gym.
  2. We have to also remember that not everybody with POTs has blood pooling also, there is a lot of variability. I personally do not notice really any blood pooling when I stand. However, it probably helps that I am a runner and have strong leg muscles to help return blood and prevent pooling. My main cause of POTs is hypovolemia - just not enough blood circulating.
  3. I wanted to say it's actually GOOD that your Autonomic Function Tests were negative. Those tests generally are negative for people with POTs. Those are looking for different autonomic nervous system dysfunctions such as autonomic failure..ect. You actually want an intact autonomic nervous system. They do those tests to rule out a different condition that could have symptoms similar to POTs. When you were at this facility did they re-do your TTT? If so, did they say you had POTs from that test? (Although, I guess part of the ANS testing is generally a TTT, so did they say your TTT was normal as
  4. Actually, that study was published by some well respected doctors researching POTs. If doctors weren't using placebos in their clinical trials then actually they would be doing us a disservice because those are needed in almost all clinical trials. From reading just the abstract they clearly state that they believe it is due to a cardiovascular physiologic variation rather than a "psychological benefit from perceived therapy". And at the end it just says "These data highlight the need for a placebo arm in hemodynamic clinical trials in POTS, and may have important implications for diagnosis of
  5. I think Florinef has helped me the most. It does take a little bit though for you to start feeling the effects. But my episodes of "seeing spots" and dimming vision while standing have decreased a lot. I still have them occasionally but it's not nearly as often before. And when I had to stop the medication for testing I noticed a drastic difference in how I felt off of it!
  6. When I was at Vanderbilt they told me to take in 8-10 grams of salt per day. They were actually against the idea of salt tablets unless you couldn't get it in your diet. They said what they tell their patients is to take 3 tsps of salt and put it in a plastic baggy daily and take it with you and sprinkle it throughout your food during the day. Each tsp is equal to about 2,300 mg of sodium so that is an additional 6,900 grams and since you will have sodium in your diet already that is an easy way to get the 8-10 grams a day!
  7. 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 o
  8. Has she ever been on Florinef? I have low blood pressures as well due to Hypovolemia and Florinef has been the #1 drug that has helped me manage the low blood pressures as well as the associated symptoms. I occasionally still have periods of low blood pressures but they are significantly improved with the florinef.
  9. Faintinggoat - are you sure it was a Total Blood Volume test they did that decreased by 50%? Total Blood Volume Tests are ONLY done while lying down, so I'm thinking it was a separate tests they did, maybe something that checks for blood pooling..+ a 50% Total Blood Volume Deficit is insane and you wouldn't most likely be talking with us right now..I mean that is stage 3 hypovolemic shock you would be in a hospital. Andybonse - I have been diagnosed with hypovolemic POTs. I have had the total blood volume test done at Vanderbilt Medical Center. I have a 19.3% total blood volume deficit. 20% p
  10. It's still normal though, even without exercising. The 50 may be just a little bit low. What are your heart rates with your BP's? It's actually a normal response for BP to increase when you go from lying - sitting and then to standing. It will go up initially and then normalizes out in normal people who don't have high or low BP.
  11. I wanted to say also I think exercise helps greatly as well. It doesn't cure my POTs, but it makes the symptoms manageable. I say this because I wasn't diagnosed with POTs until Sept 2013 but I've had symptoms for about 8 years. However, whenever I had testing done the doctors told me everything was normal. So with that mindset. I tried to ignore my symptoms and just continued trying to live like a "normal" person. I knew my body had limitations, I knew that I couldn't workout in the morning, I haven't been able too for a long time. However, I was determined to continue working out. And I did,
  12. Also with the potassium, you will want it checked after you have been on Florinef for about a month or so. Mine went from 4.2 down to 3.1 once I started the Florinef. I am now on potassium and it will be checked every 3 months routinely. Florinef works by retaining sodium at the expense of getting rid of potassium so even if you had a normal level before starting the Florinef, it doesn't mean it will stay normal after you start it.
  13. Florinef has really helped me as well! I have hypovolemic POTs (19.3% total blood volume deficit). It makes my drops in blood pressures much less severe than what they were before. I had some as low as 69/47 with HR 163. Normally they would be around 80/60 in the mornings without Florinef and my HR would be 130-160's. After starting the Florinef, my BP's are more stable, not nearly as low. I still occasionally get some low BP's but it's not daily. My HR still increases regardless but it doesn't usually get past 130 now if I'm just standing. I take some other medications as well. I will say tho
  14. Andrie - yes you do have to go off of all your medications prior to going. (At least ones that are related to POTs, or could effect HR/BP) Corina - I'm not sure how much the test would cost through insurance. If you go in for research and that test is part of a current study you do not pay for it. DKD - You don't have to have a "bad enough" case to go to Vanderbilt! As long as you meet the criteria for POTs you could qualify. They have a worksheet they will want you to fill out and they will review your medical records. For example, I am able to work full time and work out. I also drove mysel
  15. sue1234 - They are still doing more research as to why many POTs patients have low blood volume. They suspect it has to do with the renin-angiotensin-aldosterone system (Involves the kidneys) that is supposed to help regulate blood volume. They don't know yet though where the problem is and/or why it isn't working properly. They measure your blood volume with a nuclear medicine test. They take some blood out and then inject you with a radioactive isotope. In my case they used Volumex (HSA I-131) and then blood samples were drawn afterwards at specific times. Also to help protect your thyroid
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