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Simmy

Hello Again To Everyone

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I had to get away. I began focusing on my illness a bit too much and it was making me crazy. My apologies to those I may have left 'hanging' in the middle of a discussion, and thanks, issie, for noticing my absence. It took some time for me to find the right balance between POTS and normal life.

To update my condition, I'm down to only two daily meds – Propranolol and Desmopressin – and along with lots of recumbent exercises for legs and abdomen, my standing time is up to nearly 10 minutes (on good days). A Poor Man's Tilt now goes from an average of 55bpm supine to around 90 or 100 standing, quite an improvement, but any upright physical activity still pops me well into the 120s, 150s and beyond, so much more work is needed.

Unfortunately, just about two weeks ago, my 16 year old daughter began complaining about "funny heart feelings" and being really tired. One PMT later and it was confirmed – 62 supine to 114 standing and instantly back down to 70 lying down. We got her a Polar heart rate monitor watch immediately, along with a SmartSync heart rate recorder, and we discovered she hit 192bpm walking from the school bus into school wearing a heavy backpack. The first available appointment with a POTS specialist is in early August, but we've already got her on our own regimen, including 5gms of salt daily, a gallon plus of vitamin water, crunches, leg exercises, a rolling backpack, a shower stool, getting her 20-30mm/hg compression hose, and she's quickly learned all the countermeasures, especially squatting. Her favorite so far was getting to wear her very own POTS shirt, (you know the designs I created a while back) just like her father. Only two days of school left, which is very good news, so she can concentrate on herself over the summer, but she already managed to get special permission from the school nurse last week to have a drink with her and elevate her feet in class, lie down when needed, and she even got her very own elevator key, simply by showing the nurse her heart rate monitor going into tachycardia by standing up. Way to go, Naomi!

Life never follows a defined path; it throws you curveballs when you're expecting fastballs and sometimes you swing and miss. I've struck out many times over the past few years, but I've also hit a few and scored a couple of runs. Thankfully, Naomi has lived POTS vicariously through me and has a good idea of what to expect and how to deal with it, but most of all she recognizes that, as a teenager, her prognosis is far better than mine could ever be and that she can ultimately win the game, but now is not the time to swing for the fences; I'd be happy with a well-earned walk to start.

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Welcome back Simmy-

I have thought of you often and hoped you were doing better.

Sad news about your daughter but at least she knows what is going on and you all know the routine far too well.

hope the heat is not too hard on both of you

noreen

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I'm new since you've been away more than likely. I just recently was diagnosed with POTS.

I ma happy to hear that you are doing well for the most part!! Sorry about your daughter, but like you say, if she's been around her family who has the condition, at least she's knowledgable about things to do to improve her well being.

POTS shirt? Where do we get pots shirts... did you guys make them yourselves?

Have a wonderful week :)

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Simmy, glad to hear you are making progress! Can you say what specific exercises you are doing for legs and abdomen? Sorry about your daughter, but at least you have the advantage of knowing all the ins and outs of this. Makes things a little? easier. What do you think about the fact that she has the same condition as you? Does it make you think there is a genetic component or a common environmental factor that may have contributed? Or is it just coincidence? Good luck - I hope her time with POTS is short lived. Oh and love her name! :D

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Welcome back, sorry to hear about your daughter. That is alarming when two members of the household develop the same condition, although there is likely a genetic component for many of us, one has to also wonder about environmental causes. So glad she has a parent who can ensure the best and most prompt treatment. Glad you are doing better too.

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Welcome back! I was wondering where you'd been as we hadn't heard from you in so long.

Glad you're a bit better but bummer about your daughter. I think it's always harder to watch your kids going thru something than it is to deal with it yourself.

Nice to have you back on-line! :)

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Thanks for the re-welcome. You would expect, for both the father and his daughter to have contracted POTS, that besides the genetic component, environment might be a factor too, but I can call that one a resounding no. You see, Naomi’s mother and I have been divorced since Naomi (yes, great name) was about five and she lives with her mother some 3,000 miles away, in Oregon. She flies out to see me here in New Jersey three times a year for only a week or a few at a time and I haven’t seen her in person since late March, so environment as a possible factor becomes highly implausible, which makes genetics highly probable. I created a defective human :( But she still loves me anyway :)

The exercises I do include crunches (I’m up to 150 daily… well, let’s say at least 5 days a week; some days it just ain’t happening) and pedaling for 30 minutes a day on a pedal exerciser that sits on the floor while I sit semi-reclined on the couch. Here it is on Amazon:

http://www.amazon.com/Isokinetics-Inc-Folding-Adjustable-Exerciser/dp/B003OYOIFC/

The key for me has been doing exercises that do not raise my heart rate too high (everything horizontal) while strengthening my abs, thighs and calves, so when I stand or sit upright it takes longer for blood to pool in those areas. While doing my crunches I rarely go over 80bpm and I stay around 100bpm while pedaling at about 80RPM with the friction knob set to medium-high.

Oh, and the POTS shirt was a design I concocted in my warped mind that I used for myself and also made available to anyone else who wanted to use it. You can see the designs, copy any you like and then go to zazzle.com or some other online T-shirt printing site, upload the images (I like #2 in front and #4 on the back) and have the shirt printed and delivered to you at their price. Here’s the link to the designs:

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Genetics plays a role in a person's ability to detox from environmental toxins, so this is still a possibility. Doesn't mean you and your daughter came in contact with the same one, but rather just the accumulative effect of the toxins in general. For example, ApoE4 is now being shown as a possible reason why some people may develop Alzheimer's Disease. Their ability to detox heavy metals from the body is significantly impaired.

http://www.nel.edu/pdf_/25_5/NEL240504R01_Mutter_.pdf

I have to run, but just wanted to throw this idea out there.

Thanks for the re-welcome. You would expect, for both the father and his daughter to have contracted POTS, that besides the genetic component, environment might be a factor too, but I can call that one a resounding no. You see, Naomi’s mother and I have been divorced since Naomi (yes, great name) was about five and she lives with her mother some 3,000 miles away, in Oregon. She flies out to see me here in New Jersey three times a year for only a week or a few at a time and I haven’t seen her in person since late March, so environment as a possible factor becomes highly implausible, which makes genetics highly probable. I created a defective human :( But she still loves me anyway :)

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