SeattleRain

Thanks for info! I am honestly never, ever, ever eating fish again. If I do it's going dry as cardboard by the time I'm through with it. I can't handle the thought of parasitic worms in my food.

I was about to take a shower when one of my dogs came to say hello. He sat down on the shower mat, I petted him for a minute then when he got back up I noticed something on the shower mat. Then, I noticed it MOVING! (Oh, the horror!) Upon closer examination it appeared to be some type of parasitic worm (pretty small). I have de-worming meds that I gave both of my dogs right away but naturally (being paranoid) my first thought was "Oh my God, I hope these things aren't in me". I've been reading up on different types of parasites that can live in humans that can cause blood loss, anemia, iron deficiency, fatigue etc etc. I'm wondering if anyone here has ever got tested for parasites or anything? "One study found that 46% diagnosed with Chronic Fatigue Syndrome actually had parasites responsible for the symptoms" http://youtu.be/yRglUAttmzQ

Thanks for sharing, this is perfect! I'm going to be printing this out for my cardiologist for my next appointment. Also read a few things I didn't realize as well. I don't mean to intrude on your share but the formatting on that blog was hard on the eyes (with the unnecessary line breaks, etc) Here's the original source: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1501099/ Thanks for posting this!

I second this question. Before I follow up with my cardiologist I'm bringing a list of tests I want done. If you haven't been diagnosed yet, and depending on your symptoms, it's likely you would want to get a stress echocardiogram to rule out serious heart problems. Past that, basic blood tests that would rule out any thyroid issues, etc would want to be done. I've had all those and more. I think everyone here is pretty familiar with a Tilt Table Test. Sometimes they will do sitting/standing blood pressure to check for hypo/hypertension. The first test I'm looking to get done is a Total Blood Volume test to see how much blood's in my body - I want to rule out hypovolemia. I also hope to get an MRI just to make sure everything else is okay.. I'd be interested in knowing what tests you get done so keep us updated, please!

Lol, yeah. Me either. The stuff I got isn't too bad but maybe I'm just not as sensitive to cardboard-like food.

The main symptom I experience with POTS is that when I stand up, it feels like the blood going into my heart drops and for about 10 seconds my heart is throbbing/pounding really hard and slowly like it's not getting enough blood. One of the most interesting things I've noticed is that if I raise my legs above my head before standing up, this almost completely alleviates the above symptoms. In addition to that, the tachycardia does not set in nearly as fast or as bad - it takes a good 5 minutes of standing up for my HR to get up to where it would have been if I didn't raise my legs above my head before standing. I'm curious to know if anyone else has tired this (or is willing to). Especially the people that know they have pooling in the legs and/or have hypovolemia. Am I wrong to assume this suggests I have pooling in the legs (and/or abdomen)? I can't think of any other reason. My 1st cardiologist (who I dislike, fired and thinks I'm paranoid) made the comment "Well.... maybe you're relieving pressure on a joint or something".

Did you test your BP while supine, then while standing? I'd be interested in the numbers you get. Have you looked into this? http://en.wikipedia.org/wiki/Orthostatic_hypertension From my understanding, an increase in heart rate is a compensatory response to decrease in venous return (in this case, related to pooling in the legs and/or hypovolemia). Hypovolemia is actually something I wanted to get tested for. They have a "Total Blood Volume" test to see how much blood is in your body. I plan on persuading my doctor to schedule this test for me. Also, if/when you want/need to, you could try ordering some compression stockings. I got a pair for around $10 on Amazon. http://www.amazon.com/gp/product/B... My HR usually went from 60 supine to around 110-130 standing. When I first got these, it went from 60 supine to 70 standing. It was amazing. I think they lost their elasticity pretty quick and I plan on getting the more expensive ones that go all the way up to your abdomen. Anyways, my point is if you tried something like that and it helped, it could suggest you do have pooling going on.

You don't like the taste of cardboard?

I normally don't eat any kind of bread but yesterday I spotted some "Gluten-Free" bread at the grocery store and thought I'd try it. It's nothing special taste-wise. Surprisingly, I don't have that "I just ate bread" feeling when I eat it - which is pretty cool. Has anyone else tried it? I wonder if gluten-free pasta will have the same effect...

What is an "exaggerated valsalva response"? What happens? I was just reading about the physiological response here: http://en.wikipedia.org/wiki/Valsalva_maneuver#Physiological_response And how I think this could be part of my problem: Vena cava compression: An increase in the resistance of the vena cava, as occurs when the thoracic vena cava becomes compressed during a Valsalva maneuver or during late pregnancy, decreases return.

You would probably have to get a blood pressure device to find out for sure. When I take mine while I have the throbbing it always is.

Thank you for the responses! -do you usually have blood pooling in your lower legs? If you do, was this different? It's hypothesized that I do. There's no visual evidence. My compression stockings seemed to have helped when I first got them but by the 5th use or so I couldn't tell a difference. It could have been placebo effect (although not sure if that's actually possible) or they lose their tightness really fast. This was very different - it felt like my legs were weak and no blood in them. The same feeling that was in my head which was a very light headed feeling. Maybe you're causing yourself some anxiety, (we all do, right!) That's definitely true. For me, the mental anxiety doesn't start to set in until after the peak physical symptoms of the attack. Once they're there and they don't go away after a certain time, I start to worry about it and get anxious. -Are you feeling like you're having trouble breathing? Or do you just notice that you are not breathing as much as you think you should? I feel like I am not breathing as much as I think I should. If I let my body breathe as it wishes I feel more light headed. It feels like whatever controls my breathing rate is slacking. Thanks again for the responses everyone. Much appreciated!

My symptoms started as very low BP, very low pulse and lightheadedness/fatigue. That's since been replaced with a normal supine HR/BP and fluctuating BP upon standing with some tachycardia. It's a welcome change because it feels like my body learned how to compensate for whatever's wrong compared to making me feel like I was about to die 24/7.

I have this problem too. I'm convinced that it's due to pooling in the legs or abdomen (or both) and regardless of your blood pressure, the reduced blood volume/blood flow in your head will leave you feeling light headed. I also feel that it's possible some veins will not constrict properly. You can look up sympathetic activation and see how blood vessels are supposed to constrict and in people with autonomic dysfunction this can be a problem. I think it's primarily in the extremities (arms and legs) but I've read scholarly articles that reference POTS patients with "floppy" blood vessels around the heart, too. I presume you can have this to a certain extend in your head as well. When I stand up, the front of my face will throb and I can tell my blood pressure is rising. However, the sides and top of my head feel numb for lack of a better word - like the blood is being drained. I think (but have no idea, really) this is because certain veins are not constricting properly or maybe some are constricting too much...

Supine BP right now was 122/68 Standing is 141/89 I should have took my BP while I was at the peak of the attack supine and standing. I'm feeling better as of now. The high blood pressure is happily welcomed as it feels like it's compensating for something. Before I felt like I had severely low BP but I can't validate this - could have just been a sensation.

Tonight and last night have been my first POTS attack relapses in several months. You know, the ones where you think you're going to die and need to get to the emergency room ASAP. It's been a reminder to how horrible I can feel physically and how dealing with tachycardia and being lightheaded is a walk in the park compared to this. I'm curious to know if other's have any of these symptoms: 1) Standing up, I feel light-bodied. Normally I feel light headed, drained from the waist up. With this, I feel like my entire body (excluding my lower gut, maybe) is lacking blood. My feet/legs start to tingle like they're falling asleep. 2) It feels almost like as my HR increases, my breathing rate decreases, which is really strange as they usually go hand in hand. This gives me a horrible feeling like things are not matching up. I have to purposely breathe a little faster and it feel like anxiety death is pulsating across my chest and head as I do this. The anxiety seems almost entirely physical. It's almost indescribable --- like my body is tossing and turning inside trying to deal with something that's seriously wrong. It's also important to note that the first attack last night (which is undoubtedly carrying on to tonight) was triggered by staying up 4 hours or so longer than I should have. I feel like I damaged something. The past 8 months I feel like my body's been repairing something really slowly and last night felt like I re-opened a healing wound.

Keep us updated with the tests, I'd be very interested in this... Thanks for the post!

Thanks for the updates. How does one get their total blood volume tested? Thank you

Have you tried eating small amounts of leafy green vegetables, like mixed greens? They usually have them pre-washed, organic at the grocery store near the produce. This is my go-to food when I'm having stomach issues as it makes me feel great and doesn't give me an overwhelming full/bloating/heartburn feeling like other foods do (including whole fruits).

Interesting. My "numbers" appear to be the same as yours as the day goes by but my perception of them are different. Before sleep is the worst I feel. I feel like after 14 hours of being up, my heart is feeling weaker and slowing down - telling me it's ready for sleep and doesn't want to keep beating that fast.

You bring up a good point, brethor. Before my POTS onset, I was doing high intensity interval cardio training along with resistance strength training. Although, I wasn't exercising that day, or even that week - but it was part of my lifestyle for the previous 6 months or so. I had also just got back from Florida, where I walked around in 95 degree weather for hours each day. Nonetheless, exercise has still helped me feel better. If only I had the motivation/determination/energy to get up and exercise every day...

I can imagine that the anxiety would make it worse - I'm sure that's tough to deal with. Do you have constant anxiety, attacks through out the day, or usually have big anxiety/panic attacks at certain times?

I forgot to respond to this. You were spot on about the symptoms coming back after stopping an exercise routine. I had maybe 5 days of bliss before the palpitations returned, and another 4 - 5 days before the symptoms of standing up returned.

I'd also like to point out that the turning point for when I went from really low pulse, low blood pressure to normal RHH to moderate tachycardia was when I took a stress echocardiogram. They took an ultrasound of my heart, then put me on a treadmill and made me sprint until my HR reached 185. This was the first time I exercised in months since having my POTS onset and after the test I felt great. My heart felt pretty sore - like a sore muscle - but after that my palpitations were way less common and way less severe. That's when I started noticing being active is important and if you lie in bed all day, things are likely to get worse, not better.

what adjustments have you had to make since you realized you had POTS? Well the first adjustment I made was my sleep schedule. I was physically incapable of staying up late like I used to. So my schedule is a lot more "normal" now. I'm waking up around 12 - 2pm consistently and I try really hard to keep it that way. If I get on a bad schedule where I'm going to bed at that time, my symptoms are unbearable - so I do everything I possibly can to avoid that. I've noticed a huge difference in overall well-being. The second adjustment was moving from my office/desk to buying a new laptop and working from bed. This was when my blood pressure was extremely low, along with horrible slow pulse - sitting upright was too uncomfortable. When my symptoms were at their worst I was forced to keep a strict diet of organic fruits and vegetables. Absolutely no grains or refined sugars (chocolate was shown to be a huge trigger). I started tanning (I have a tanning bed) and the Vitamin D increase seemed to help. I drink 3/4ths to 1 gallon of spring water a day - and that's paramount to how good I feel. If I neglect my water intake my body gives me **** for it. Exercise has shown to be the best thing to alleviate my symptoms and make me feel a lot stronger. My most active period since having POTS was in August and while I still had bad POTS "attacks", I had no palpitations for a long time (almost a month). Well, I might have had a couple but they weren't bad at all. If I lay in bed all day, the palpitations haunt me. If I'm up and around, get my HR going, the palpitations subside for at least a day after that. I wouldn't recommend exercising though until you see your doctor and he approves of it. I made another thread about how a certain exercise experience made a world of a difference: How long has your symptoms been going on? What do you do about the tachycardia? POTS onset was in late June, so about 8 months. I don't really do anything about the Tachycardia. It's only been unbearable 2 or 3 times and that was in the thread I linked to above - where the prolonged exercise caused my heart to go nuts - but after that it calmed down and was the best I've felt since my onset. I tried compression stockings and at first I think they helped. My standing HR was 70. I think they may have lost elasticity, though, as they don't seem to help as much anymore. That, or possibly placebo effect although not sure. I plan on trying the expensive compression stockings that are a bit tighter and go all the way up to your abdomen. I took a Beta Blocker as mentioned and it brought my HR down but it was the unbearable - I was about to go to the ER. My HR dropped to 35 while resting and my BP was pretty low. But the worst was the horrible chest thuds/palpitations. It was like a cruise missile smashed into my heart while I was standing up - it made everything so much worse. It was the lowest dose of Atenolol, and I still feel like I only have standing palpitations now because of it - whereas before I only had palpitations while lying down...