Simmy

Like tearose and EarthMother, I also find that the absolute best way to stop a tachy when I cannot lie down is to squat, balancing myself on my toes. It stops the tachy instantly and remains low as long as I stay in that position.

Very nicely done. In my opinion, yours gets the Oscar for best POTS video on the web, best graphics and best supporting puppy. I did not give you best actress because people need to understand that you were not acting. You demonstrated what "normal" is like for us. Simmy

The Polar heart rate monitor was the best $70 I ever spent. Not only did it assist me in identifying the causes of high heart rate, but what helps to lower it too. But I've also discovered some really strange things occurring. Before I began my medication, when I'd walk on the treadmill my hr would hover around 95bpm. The instant I stopped walking it shot up to 130 and above. Walk again and it goes back into the 90's, stop and it shoots up. Over and over again. Evidently, this is because while we're walking we're physically pushing the blood in our legs back up, but the moment we stop it settles back down. Another thing that I found odd was sneezing - one sneeze adds about 10bpm, two sneezes 20bpm, and three sneezes in a row has increased my hr by as much as 32bpm. Of course, it settles back down within a minute. Raising my arms above my head and moving them about (as in brushing hair) will also add some 20bpm. The most drastic and incredible change for me is how quickly it drops when I lie down or squat, like after climbing a flight of stairs and hitting 150, it drops to 100 within 10 seconds of lying down or squatting, and way down to 60 only 20 seconds after that. One more thing. As one of the few men here, I can now partly empathize with women and wearing a bra. Not very cumfy, but I've gotten used to it

Hi Cat Lady, I began wearing a Polar heart rate monitor a few months ago, when I suspected I had POTS, and it was instrumental in my diagnosis. I was only diagnosed a couple of weeks ago, after a negative tilt table test (must have been a "good day") and many doctors telling me I was fine. Once I purchased the unit I decided to document the crazy spikes in heart rate, just like yours (65bpm supine, 120-150 standing, 150+ climbing stairs, 170+ after a 10-minute shower, etc.). I used my cell phone to video tape the spikes in one instance and posted it on YouTube to ask others if they thought I too had dysautonomia. Once I showed the video to my DysDoc, he diagnosed POTS on the spot. You can see the video here: I believe it is essential for those yet undiagnosed and suffering with dysautonomia symptoms to document them as accurately as possible, so doctors don't brush them off as "all in your head". Video doesn't lie. Another benefit of the heart rate monitor is, as you mentioned, the ability to identify triggers and causes of high heart rate, thus learning to avoid them. Besides all of the wonderful recommendations I've received from fellow sufferers, like fluids, salt and pursed-lip breathing, I've personally found that squatting helps tremendously when you cannot sit or lie down, if your knees can handle it. Squatting down, with knees completely bent, sitting on my heals and balancing myself on my toes and remaining in that position drops my heart rate instantly from any high number down to almost normal, and stays that way as long as I remain in that position. I get plenty of funny looks while I'm squatting in line at the bank, but who cares. It absolutely works. I guess I'm one of the lucky ones, as it has only taken 3 months for me to be diagnosed, as compared to years for others. Without the heart rate monitor I suspect I would still be undiagnosed. I've been on Verapamil now for a couple of weeks and although I'll never be cured, I can now at least almost function as a human. Cudos to your husband for the purchase. Smart man! Simmy

Hi guys, Had a great experience with my doctor yesterday. He actually knew what POTS was! Nice to finally see a doctor who is understanding, knowledgeable and was willing to sit down and talk (and listen) for over half an hour. His initial diagnosis is I have some sort of Dysautonomia, probably POTS, but might be electrical issue. He hooked me up to a 48 hour Holter monitor and I should have more information next week. He also observed my heart rate monitor going from 75 on his table to 126 instantly when I stood up and confirmed it by hand. However, about 15 minutes later he had me stand up again, but this time my pulse only went into the 90's. It's certainly intermittent. As for the ResQGARD, he knows of it, says it does work, but also said (like you have) that much the same can be accomplished with breathing techniques. Your idea of using a cocktail straw is simple, yet brilliant. Let me know how that works for you. For now, he recommends what y'all have - at least 2 liters of fluid daily (preferably Gatorade), more than 5 grams of salt a day, breathing properly, leg exercises and raising the head of my bed 10 degrees... and, as tearose said, anything else that seems to help. I'm not crazy. Yay! I guess I can cancel my appointment with the Happy Dale funny farm

I've not yet purchased the device, as just two days ago I discovered it exists. It is a rather small and portable unit though, so carrying it around all day shouldn't be a problem, if indeed it works well. I also have no idea as yet as to the cost, but you can learn more about it, including what it looks like, by clicking on the link I provided. The Yoga method of breathing you mentioned sounds quite similar in concept. I believe the only advantage to using the device rather than manually restricting your inhalation is the fact that the device is "pre-programmed" with the proper amount of resistance so you don't have to guess. It also has a port one can use to add oxygen, if needed. I have my first appointment today with a POTS "specialist". I'll be discussing it with him and let you know what his thoughts are later.

Hi all, During my research I came across oiresource.com which discusses various methods used to alleviate some of our symptoms. Included amongst them is a device called ResQGARD Impedance Threshold Device, made by Advanced Circulatory Systems - http://www.advancedcirculatory.com/ResQGAR...ct_Overview.htm. It is a small, non-invasive unit which applies inspiratory impedance when used to breathe through. It is claimed that "it enhances the negative pressure (vacuum) in the chest, which pulls more blood back to the heart, resulting in increased preload and thus, enhanced cardiac output on the subsequent cardiac contraction." It has been rather difficult finding a direct distributor, but I have some leads if you should desire. I've not yet purchased the device, but since the theory behind it is nothing more than creating a resistance when inhaling, sufficient to enhance negative pressure in the chest, I decided to experiment with other methods capable of producing the same results. To my astonishment, it works. To emulate the inhalation resistance I simply pucker my lips, as if to whistle, but instead of blowing out I inhale. While tightening my lips in such a way that incoming air is forced through a tiny opening, I inhale deeply and strongly, fighting the resistance, for 3 to 5 seconds and then exhale normally. If it sounds like an elephant charging, you're doing it properly. I experimented with this idea last night - I climbed a flight of stairs and hit 137bpm, as usual. Normally I'd immediately lie down for relief, but this time I stood in place and tried this breathing method. Immediately after the first breath, instead of my HR continuing to climb, I observed my heart rate monitor and saw it actually begin to drop. After 4 or 5 more such breaths, my HR returned to the lower 80's - while still standing! To confirm my unbelievable results, this morning I stood up, twice. The first time I stood and just breathed normally and, of course, my HR immediately rose from 66 supine to 115 standing, and continued its upward climb for a couple of minutes. I then rested for half an hour. I then stood up again, but this time while using the resistance breathing method. Confirmed! My HR went from 68 to 95 rather quickly and then settled into the 80's. Even after 10 minutes in a vertical position it never topped 95bpm, although the lightheadedness was not greatly improved. My question is, has anyone else tried this method and what were your results? Has anyone actually used the ResQGARD? Thanks, Simmy

I'm another one with motion sickness. It started about the same time I was diagnosed with the Epstein Barr Virus, some 14 years ago. However, I only started suffering from POTS 3 months ago due, I believe, to a severe sunburn. Logically, they are all related, but as we know, this is an illogical illness.