lulusoccer

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.

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.

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 well?) When you check your HR at home is it usually pretty elevated? >30 bmp from your lying down HR? (And it needs to stay elevated, not just rise for a few seconds and then go back to normal). That needs to happen for it to be positive for POTs. The BP doesn't matter as much because some people have low, normal, or high

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 these patients." which is very true. This study is in no way demeaning to POTs patients and is just a way for the medical community to help tailor future research studies and make sure to include a placebo group. P.S.. also some of the same doctors that did the research on the antibodies are also the same doctors who wrote this article. They very much respect POTs patients and are trying to help us, not hurt us!

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!

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!

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!

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.

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% plasma deficit and 18.6% red cell volume deficit. Despite my Hemoglobin and Hematocrit always showing normal, and my CMP/BMP always being great, it's all a little misleading since the Total Blood Volume is low, and plasma and redcell are almost still proportionate. I have had aldosterone checked twice. The first time it was very low and the last time it was on the low end of the normal range. However, aldosterone is a very tricky blood draw to have done and errors can be made when having it done because it needs to go on ice, and it needs to be run ASAP so I'm not too sure how reliably those are. + all of these lab values are actually very much dependent on body positioning so if you are standing, lying, sitting, they are constantly changing so like my endocrinologist said one value doesn't actually mean much since it's "normal" for them to change so constantly. My renin is always normal. I have also had angiotensin II drawn for a study at vanderbilt but I do not have those results yet. They do suspect that hypovolemia in POTs is related to the Renin-Angiotensin-Aldosterone system not working properly but they have not found the exact mechanism or cause yet, more research is needed. And to answer your last question, I think I void way more than normal people and I drink a normal amount of fluid

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.

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, 3-4x/week for the last 8 years! I am able to work Full Time and pretty much live a fulfilling life. I knew there still was something not right because I would be incredibly tired all the time and need to take naps daily but I think the exercise made it so I could still function. I didn't even realize how high my heart rate was getting in the morning (130's-160's) and I think it's because I was used to high heart rates while exercising so it didn't bother me..it's all the other symptoms that are associated with it. I am on medication now after finding out that I have POTs and it is helping some. I mean I still have symptoms daily but I don't feel like I am being held back. I feel like if I want to do something, I can, it may take some adjustments but I can still do it. Side note: I actually think exercising finally led me to getting a proper diagnosis! I was training last spring/summer for a Tough Mudder (13 mile obstacle race) and was so incredibly fatigued all the time. My training runs were getting much worse, not better! I was like regressing and couldn't understand it. Every time I'd stand in the morning my vision would dim or completely go away and I felt like I'd pass out. I was really weak a lot and my irritable bowel syndrome was worse. Plus I was having daily headaches. So I finally went back to my doctor and was like something is definitely not right. And it finally led me down a path to get the diagnosis!

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.

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 though that if you are hypovolemic you tend to generally have narrow pulse pressures, not high. So pulse pressures <25. Yours are actually normal. Normal people can have PP of 40-100 (100 is generally if exercising though). Your MAP is also good, it should be between 70-110 and you need at least 60 to sustain organ perfusion.

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 myself which is a 5.5 hr drive! I definitely still have POTs...for example on my posture study my BP went down to 67/49 and my HR was 163 (part of hypovolemia). On another day my HR only went up to like 114-124 max and my BP was steady..it just varies. The other 2 POTs patients that I met on the unit were also able to work and very functional. So, if it's something you are considering it couldn't hurt to send in the application =)!

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 they will have you take Lugol's twice a day before, the day of, and the day after as well.