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.

I don't have the results yet for the catecholamine's that they drew and I can get those in about a month they said. So I may get some more results later as well.

I submitted my application at the end of October and was able to go in January. So I only had to wait about 2 months. But I also had all my information ready for them (Such as tilt table results, lab results..ect..) I had scanned them into my computer and when they asked for them sent it by e-mail. I had already done a ton of research on my own about POTs, but in terms of learning about my illness I did learn that I have hypovolemic POTs, which I did not know before. I also learned that they really recommend a low dose beta blocker such as 10mg propranolol (up to 4x/day) for treatment. So they were able to start me on that. They gave me exactly how much salt they wanted me to consume daily which is 8-10 gms and that I should add about 3tsp of salt in a little like plastic bag daily and take it with me to add it on foods during the day because that will get me about 6gms. I was able to ask a lot of questions. They actually do not really recommend a lot of autoimmune testing to be done, at least not at the moment, nor do they necessarily recommend the Vit B12 test be done. They said it can, but actually most POTs patients will have a normal Vit B12. (if it's low they said it's an easy fix). They mentioned the new study that came out about Vit B12 in adolescents with POTs and they said if you look at who did the research it was a group of people who really advocate Vit B12. I asked about being tested for Lyme disease and they said I could be, but that to only get treatment for it if the titers came back really high, not if they were just partially positive. They also gave me Levine's Exercise protocol to read and that was very interesting and that I should be exercising 5 days a week if I did that and I calculated what my HR should be during exercise using his protocol.

Today was my last day. They took of the Holter Monitor and then gave me a Liter of Normal Saline prior to being discharged! They gave me written discharge instructions and faxed everything to my primary care physician. They were able to fax one of my prescriptions in and then hopefully my primary can take over. It was a very beneficial trip for me, especially since I hadn't seen any autonomic specialist since being diagnosed! If you have already had many of those tests done you may not find it as helpful but it would still be helpful to the researchers! They are all very nice and I had opportunities to ask questions. I was going to have a QSART test done but due to some time restraints on the person who does them, I wasn't able to get that one, but maybe if I go back I can. Soo..Overall, I would recommend Vanderbilt Research for anyone with POTs! I will say they do recommend a lot of the first line drug treatment options, so if you are somebody who those don't work really well on, I guess it may not be as helpful to you. But hopefully if you go, you too will have a good experience and gain some knowledge as well as help further POTs research...which we all know is needed!!

Day 4: Today has been an easy day =) I have to wear a 24 hr holter monitor with BP cuff and that was put on this morning. The BP cuff inflates every 30 min while awake and every hr at night. I also am recording all my position changes, walking..ect.. and the times. I also got some of the testing back such as the total blood volume test which showed I had an 18-20% deficit in TBV which is nice to know. I did suspect though that it would be low. They also are still doing the orthostatic vitals before each meal and at bedtime.

Day 3: This morning they did some more testing! They take out your IV everyday so you can move around and such, so today they put another one in around 6:30. Then at 7:30 I had quite a few test all at once. They drew some more blood for an Angiotensin II study and for the total blood volume study. Another guy also came in and does total body composition with electrodes on your feet and hands. While he is doing that another doctor came in to inject the radioactive solution for the total blood volume test. More blood samples were taken at certain intervals after the injection while I was lying down. Then after the body composition was done, I had another 30 min posture study but this time they were drawing blood for Angiotensin II. I was able to stand for 20 min today (I didn't have to sit back down). Then they draw more blood standing. (My nurse said most people don't actually make it to 30 min anyway!). While I was laying down and they were doing the initial part of these tests I was able to speak with the doctor also and ask him any questions I wanted related to POTs. So it was nice hearing his opinion. Also, I've been able to meet a few other POTs patients while I've been here which has been amazing! I've never met any before so it's been really nice!

Day 2: This morning they woke me up around 6 and placed an IV and then I went back to sleep for about an hour and then at 7 my nurse came in and did a Posture Study. They take some blood while lying down and they do supine blood pressures. Then they have you stand up and the goal is to stand still for 30 min. You can sit if you can't stand anymore. The goal then is to draw blood again close to the 30 min mark of standing. They had me sit at the 10 min mark cause my HR was 163 and my BP 6749. I sat for 5 and then stood again for 10 min. My test was stopped around 25 min. So it wasn't too bad and the nurse was really nice throughout the whole test! I don't know all the test they run while sitting/standing but I know they do send some blood for catecholamines. The second test they did today was the Autonomic Function Test. They monitor your heart rate and blood pressure continuously. They then will have you hyperventilate, do deep breathing, blow against resistance, hand grip, and place your hand in ice water. After that, they will measure your cardiac output and then do a 10 min tilt. At 5 minutes of the tilt test they will measure your cardiac output again. (Note - these tests that I am mentioning are all part of a study so if any of you decide to go down what test they do on you could be different)

Hey Guys! Well day 1 is almost complete and I will say they have been great so far! Absolutely wonderful! The nurses, doctors, dietitians and support staff have all been very nice! It feels great to be at a place where everybody knows what POTs is! Today was an easy day. They got me acquainted with the room I was staying in. They had some admission questions they wanted to ask and then I talked with a resident who is studying POTs. He seemed very knowledgeable as well and I guess this was his second time on this unit. I also got to meet two of the people I had been conversing with through e-mail prior to my arrival. I met one of the doctors as well and he gave me some information on adding a beta blocker to my treatment. One of the research nurses gave me my "calender" for what test I can expect for the week. There are about 4 I think they are going to do. They seem like common testing a lot of POTs patients have done. Once I have them I'll post about them. Today they just had to draw a blood sample to check a cbc, cmp, and pregnancy test. They also did an EKG. They do Orthostatic Blood pressures before every meal and at bedtime as well. I am also on a very strict diet - you only eat what they give you and you need to try and eat everything they give you. The dietitian talked with me when I first arrived and I was able to look at the menu they already have made for you and if there is something that I didn't like she was very accommodating. I've had 2 meals here so far and they were both pretty good. Overall, I am still very excited about being here and everybody has been great! (And yes DKD - my avatar was in a cave in Belize - (I was on an excursion from when I went on a cruise!) It was great! I got to zipline through part of it as well!)

Starting tomorrow January 6th and until Friday Jan 10th I am going to be an inpatient at Vanderbilt Medical Center for POTs research. It's an all inpatient stay. When I was first diagnosed with POTs I did some research on various medical centers in the US that are treating and doing research on POTs and I found Vanderbilt. I have not seen a specialist for my POTs and where I live there is not one in my state. So I am very excited to be heading to a medical center where all of the doctors and nurses know exactly what it is I have! When I first decided to go in for research I tried to look to see if I could find any information on the internet about other people's experiences but I couldn't find any. I plan on posting everyday I am there here on exactly what test they are running and what types of information I am receiving! My hopes is maybe somebody else will decide to go in for their research side! I'm hoping for myself to gain some more information on what sub-type of POTs I have and better treatment options. (As well as benefit them for their research!) Here is a link that talks about their research program: http://www.mc.vanderbilt.edu/root/vumc.php?site=adc&doc=29788 Also- I will say they have been great so far! They were really quick to respond to my application and quick with all the other e-mail communications I'll start posting tomorrow night after my first full day on the unit! -Melissa

This may not help at all, I have't used the Polar Loop but I did recently purchase the Polar FT4 monitor to wear while working out and I really like it. I have only used it a few times so I can't say how good it's durability or how long it will last but I am pleased with it so far and it's from the same brand. http://www.amazon.com/Polar-Heart-Rate-Monitor-Purple/dp/B005M1P85O/ref=sr_1_1?s=sporting-goods&ie=UTF8&qid=1388531688&sr=1-1&keywords=Polar+T4

I just wanted to say the new site looks amazing! Great job!