aaron.parks

I like the Charge HR, it's very good for monitoring resting heart rate like others have said but I also haven't found it to be very accurate or quick to update when your heart rate is changing quickly... sometimes takes it quite a while to realize that my heart rate has just gone up by 40BPM. So if you're picturing quickly glancing at your Fitbit to check your pulse while you are trying to do normal daily activities (like I was) it probably wont be satisfying. It's great for keeping track of how well I've been doing based on my activity level, though: I judge my activity level by the number of "steps" per day that it reports. You can set your own goals so you're not held to the same 10,000-step standards as someone without a chronic illness I switch wrists each day or so, but for me it has less impact than a wristwatch. I usually forget that it's on, and I sleep with it on which I've never been able to do with a watch.

Thanks for the link!! I'll be there.

Hi all, It's really tricky taking your blood pressure when you stand... make sure you have someone supporting your arm so your BP cuff is at heart height or otherwise it will read much higher than it actually is. I have noticed that medical assistants often screw this up and let the arm hang by your side.... that's absolutely going to lead to really high readings: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2911816/ I also have a BP rise when I stand. My BP while lying down can get as low as 125/77, and standing I've seen it climb to 165/110 with a heart rate just over 100 BPM. I haven't had the standing norepinephrine test yet, but my 24 hour urine catecholamines were normal, so maybe it's just a reflexive overreaction to a quick drop in BP like others are talking about. Still waiting to hear back about a TTT, Valsalva response test and a QSART that I recently had done. I think Florinef made this far worse for me: that 165/110 number was after I'd been taking a very high dose of florinef (0.2mg daily). These days with a far lower dose of 0.025mg I haven't seen my BP reach much above 155/98 on standing (and typically it's quite a bit lower than this). I guess the lesson is that florinef may be valuable in many cases but should be used very carefully, not just thrown at every POTS patients like my (former) cardiologist did. It took a couple weeks after reducing the dose to see my standing BP come back down to slightly more normal. Also, I really don't recommend the wrist based monitors... maybe it's the shape of my wrist that is incompatible, but a top rated wrist monitor I tried would consistently read 20+ points higher than my automatic upper arm cuff and the doctor's manual cuff. My girlfriend's reading with the wrist monitor was nearly correct, but mine was way off. Just be wary, and I think it's essential to have a reliable upper arm cuff monitor, as tempting as the wrist monitors might be.

Have you ever tried measuring your blood pressure while this is happening? Those are times when your BP would generally be quite high: Sitting or lying after walking/exercise can cause a large spike in BP even in normal people, and depending on your flavor of dysautonomia the spikes could be abnormally large. The heart rate should go down reflexively when BP is high, so that might make sense based on your description. Even if you normally have low orthostatic BP, you may still have sharp spikes in these cases. If your diastolic BP (the lower number) is much over 100 or the systolic BP is over 180 for more than a minute or two when sitting after exercising, you probably would want to talk to your doctor (it's normal for exercise to raise your systolic a lot, and your diastolic a little, but it should return to normal within minutes). Abnormally large blood pressure shifts could probably cause the palpitations, and very high blood pressure might cause some respiratory symptoms. Hope this is resolved soon for you! Aaron

Hi all, Here are a couple notes on the Fitbit from my experience with it: I have been using the Fitbit Charge HR continuously for two months or so, and I do like it a lot. But based on what I've seen, it seems the heart rate feature is very "laggy", slow to respond to changes in heart rate. For me it can take several minutes to adjust to a change in my heart rate, especially if my posture has shifted (I think it's sensor has to recalibrate when blood pressure in the wrist changes). Maybe this is fine for a non-POTS individual doing some cardio exercise over 20-60 minutes, but for me, my HR can vary widely from second to second if I'm walking around. So much of the time the recorded heart rate from the Fitbit is a good 30-40 BPM lower than my actual peak heart rate. On the other hand, I think the Charge HR does a good job of tracking resting heart rate, especially while sleeping, which for me does seem to be correlated to my general well being. Step tracking, while not quite as accurate as a normal pedometer, is still really useful for setting daily activity goals. The sleep tracking has been accurate for me in terms of hours of sleep per night, but it doesn't give much more insight than this. You can also set silent (vibrating) alarms, which are good for medication reminders or exercise reminders, etc. I compared the Charge HR to a (far less expensive) chest strap heart rate monitor, which never misses a beat and responds very fast to heart rate changes. The issue with the chest strap was that it's really uncomfortable to wear, so I had modified the monitor to attach to a couple of normal EKG sticker pads instead (far more comfy). Unfortunately there doesn't seem to be a product already set up like this outside of very expensive holter monitor type devices... Aaron

Hi sleepy_lady! I have experienced this. I think it's very normal (not just POTS normal...) to see dramatic pulse rate increases when you move around at night or just after waking. Here's a point of reference: http://completingbutnotcompeting.blogspot.com/2010/02/overnight-heart-rate-monitoring.html For me, early on my "symptom anxiety" actually worsened things like this... I'd wake up to find my pulse rate high, then get anxious that I was having some sort of unstoppable POTS attack, which caused further symptoms. These days, when I feel or observe something odd happening with my body, I just take some slow and deep breaths (to stimulate that Vagus nerve, which calms things down) and often times things will return to normal. This helped me figure out which things were actually symptoms of POTS (standing pulse rate increases, blood pressure shifts, headaches, etc), and which were growing out of my "symptom anxiety". If you don't already do this, next time try 10-20 long, deep breaths (with a few seconds' pause between breaths), and see if things stabilize faster for you. I'm not trying to downplay what you're feeling as just anxiety-related (I absolutely understand the strange stuff POTS can make your body do), just sharing my own experience and what helped me when I experienced something similar. My feeling is that many of us do probably have a propensity for anxiety, because our body chemistry is a bit screwy from the actual autonomic dysfunction. Also, if you feel this may be due to overnight dehydration, you can increase blood volume retention by elevating the head of your bed slightly (just several inches). This decreases the pressure in your kidneys at night, which leads to less overnight blood volume loss. It also should improve smooth muscle tone in the vasculature of the lower body (this is according to my neurologist) which can help a lot with POTS symptoms. Have a good week, Aaron