Simmy

Yes Issie, she is wonderful and I'm very lucky to have her. I have hypo-POTS and when I tried being on top my heart rate went ballistic immediately and everything stopped, but when I'm on my back it never passes 90bpm, even when I finish. Obviously, for hyper-POTS it is different.

I agree, Sophia, but Blue's husband must also meet her needs and can supply a different natural lubricant for her by initially being 'creative' himself (which is one way I keep my wife very happy). Afterwards and once inside, he then continues to supply all needed lubrication via another natural 'pre'-method, but, and here's the key, it must be done slowly with full range - 'nearly exiting' every time so the entire expanse remains sufficiently lubricated.

I'm lucky. My wife likes to be on top anyway and that works just fine for me

It's the drastic barometric pressure changes that bring on my symptoms when I fly and airplanes at cruising altitude are pressurized to only 85% of sea level pressure.

My advice is to salt-load, lots of fluids, compression hose, elevate your feet and recline your head as much as possible, try to time your meds, if any, to correspond with your flight, and limit your flying time to less than three hours if possible.

Lieze, it's not at all obsessive to learn your new body, it's wise. As far as taking it up a notch, now you have the ability to numerically quantify your limits, but remember that it is both heart rate AND duration that cause the nasties, so once you learn them you can begin to stretch your limits without guessing and document your progress.

Even with all my meds, washing dishes gets me to 130bpm quickly. Any time your arms are outstretched or above your head, especially while standing, it takes that much more effort for your heart to get blood out there. You'll also find many other activities that cause tachy, one of which being, and I apologize in advance to those of you who might be offended by my upcoming statement, don't be surprised when you hit 140bpm from the act of wiping after taking a dump

I've had my Polar (I think it's the F3) for two years now and it was instrumental in my diagnosis and in identifying triggers and countermeasures.

I have mine set to beep at over 120bpm and under 40bpm. My highest observed while wearing it was 186, and the lowest was 37.

After many hundreds of hours of use I finally had to change the watch battery. Unfortunately, the chest strap battery is not replaceable so I had to buy another one. I later realized that the chest strap that came with my elliptical trainer uses the same frequency and its battery is replaceable.

Harry, in this country many men wear skirts, but not because of heat intolerance, just because they feel like it

Du tr?gst was du willst, es ist dein leben.

Welcome Elisa.

As MM said, check the physicians list. There are a few in Milwaukee, WI, probably less than 100 miles from you.

Curious that you said your heart pounds rapidly once or twice a month. Do you not feel a substantial increase in heart rate every time you stand up? That would be the unique hallmark of POTS (+30bpm) and is very easy to self-diagnose by performing a "Poor Man's Tilt" (search the forum). Remember though that although rare, there are those who have what I like to refer to as "Intermittent POTS", whose heart rates don't ALWAYS surpass +30bpm when standing, but instead only sometimes. And of course, with dysautonomia, there are good days and bad days. It is also possible that you have dysautonomia and not POTS, which is why you need to see a specialist and, as KC said, have your hormones checked, you're never too young.

Good luck

We put on a garage sale last weekend and the temperature was in the 90's. I was able to stay outside (in my reclining wheelchair) for three hours straight thanks to my cooling vest. It really does make a huge difference.

My normal is 40-50, but when I stand or sit upright for too long my systolic drops and diastolic rises, usually to a pulse pressure between 15 and 20. The worst I've recorded was 12 (96/84), a horrible feeling. Lying down instantly expands it.

The Polar is the only one I've ever used so I can't compare it to others, but I haven't heard complaints about it and it has worked perfectly for me. The chest strap occasionally loses contact momentarily, especially while lying down on my side, but that'll happen with any chest strap.

Sandy,

I'm so sorry you're going through all of this, especially all at once. The fear you have is real and you have every right to be scared, you are after all human. But you also have your humor (congratulations on the weight loss), your sanity, the very best doctors, extensive knowledge and access to an enormous knowledge base. The odds are with you.

I'll never say I know how you feel because only someone going through what you're going through could, but I do know what it's like to suddenly go from a very active working person to a couch potato. After becoming ill in July of 2008 and a diagnosis a year later, I finally admitted to myself six months ago that I am simply no longer physically capable of working and I filed for SSDI in March. I was denied. Lawyer hired. I doubt you would be denied with your doctor's backing. I've come to the realization that it is what it is and I gladly take advantage of anything and everything that might help me, including disability insurance (eventually), a handicap parking placard, reclining wheelchair, cooling vest and the hardest of all - the help of others. I no longer feel shame. I need it and I deserve it.

I wish I could offer some advice on some of your medical conditions, but I can't, other than saying that I too have gotten worse over the last couple of months, with more fatigue, worsening pains and other symptoms, also accompanied by a weight loss of close to 15 pounds. I know I'm not eating as much as I should because of the nausea (caused mostly by the meds) and I need to force myself to eat because I'm never hungry anymore. Perhaps that is one contributing factor.

Good luck.

I apologize, lieze, if that statement made you uncomfortable. No offense taken. While chopping off my legs would certainly help my blood pooling problem, it was obviously meant as a joke. Humor keeps me going through this.

Like you I also get gassy to the point where it pushes on my organs, particularly my heart. Again, like you, I feel so much better when it leaves (in my case from the other end), but until that happens I lay on my left side which makes the air move away from my heart and up to the right side of my chest. That helps to alleviate the pressure feeling around my heart.

As far as functionality, there is very little left. I now spend 95% of my life lying down, either in bed or on the couch. I've worked a total of about 200 hours since becoming ill two years ago through January of this year when I became much worse, and I haven't worked since. Some of you read my recent post about my near-faint while driving, so now I drive only short distances and only if it's a rare good day. I can no longer do even the lightest house chores and I'm limited to folding laundry while lying on the couch. My wife prepares all of my meals except lunch, so while she's at work I go to the kitchen, quickly grab all the plates and utensils I'll need from up high and place everything on the floor in front of the fridge, then squat or lie down on the floor while preparing the sandwich or whatever. I then walk back to the couch and lie down for 15 minutes or so to allow the nausea to subside sufficiently for me to feel well enough to eat the food I prepared. It's pretty pathetic.

I used to have shoulder length hair, but had to cut it off because I could no longer maintain it. I shave twice a week at most. Showering can only be done while seated reclined in a shower stool, using only luke-warm water. Every little thing is exhausting.

I just got a reclining, leg-elevating wheelchair and I'm still getting used to it, but it definitely helps inside my home. It should also help my mobility outdoors tremendously, as I can now lie down anywhere at any time. Too bad it can't also climb stairs.

I'm on 10mg, 3 times a day. It helps to keep my bp up when I stand, but also raises it a bit too high when lying down (+20/+20). The chills and hairs standing up are certainly not comfortable, but I'm getting used to them.

Here's a photo of the SmartSync:

http://s891.photobucket.com/albums/ac118/S...zAwMzQuanBn.jpg

I've been on Mestinon since February (along with five other POTS meds now). I started out at 30mg x2, then increased it to 60mg x2, then 60mg x3 and finally back down to 60mg x2 because it was making me too nauseous taking it 3 times a day.

The distinct advantage of Mestinon is that it boosts blood pressure specifically when standing, but not while lying down. It definitely makes me produce excess saliva and causes strange muscle twitches, along with some tingles (nothing compared to the chills from Midodrine though), and it does help my headaches and tachy, but not my dizziness (odd). The worst side effect for me is the near-constant light nausea, but worse are the stomach cramps when I stand for too long.

I'd agree you should begin at 30mg x2 for at least a week or two (some will say a month or two) before increasing to 60mg.

I hope it works for you.

I don't know the model number, but it was the cheapest Polar I could find two years ago. About $60. Any polar with a chest strap will do.

The recorder is called a "SmartSync Heart Rate Data Logger" made by Oregon Scientific. It's about the size of a silver dollar and about 3/4" thick, weighs almost nothing and has a clip on the back to attach it anywhere, even to clothing. It's precisely tuned to receive the signal sent by the Polar chest strap (and a few others) and records the data at a rate of up to every second, for up to 30 hours straight.

You install the included software on your computer and when you're done with one or more recordings you plug the device into your computer with the supplied USB cable, upload the data, add your own notes if you like and then save, view, or print your results as a graph.

You can see some examples of my recent results here:

http://www.flickr.com/photos/simbofats/set...57624071020877/

When I first discovered this device I was lucky enough to find it on Amazon for only $10, software and USB cable included, but it no longer seems to be available at that price. I've seen it elsewhere for about $50. Just search for it on the web.

Sorry you went through that ordeal. The ER is horrible for our conditions. As soon as we begin making demands they look at us like we're crazy, but good for you for standing (bad choice of words) your ground! After reading this, when I see my PotsDoc in two weeks I'll ask him to write a concise "ER Instructions for POTS" list on his Rx pad, to carry with me.

That 155bpm and 120bpm minimum, were they while lying down? If it was, did it get even higher when you stood up? If it was standing, what was it when you lied down? Or was it 155 up, 120 down? Sorry about all the questions, just trying to learn us.

I hope you're better now.

I also think it's the same in each state. I got denied the first time even with my anal-retentive paperwork keeping, tons of medical records, a functionality report completed by my PotsDoc, Holter monitor reports, multiple heart rate recordings and videos of me and my condition.

Lawyer hired! He'll get 25% when I'm approved. Even he's not sure I'll win at this second "reconsideration" stage, even with him now onboard, because it's just a different pencil-pusher examining the file at social security, but he's certain I'd win if it came to the third stage, a hearing, in front of a live human.

Just don't get discouraged and keep fighting for what's rightfully yours, and remember, you can hire an attorney at any stage.

My doctor isn't concerned about it dropping so low every night either, I guess because I record my sleeping heart rates often and it hasn't dropped below 40bpm lately, so that puts him at ease (that makes one of us).

I know exactly what you mean Brye, I also wish I could get off these meds. The low heart rates don't bother me while I'm sleeping, in fact I'm probably not far from entering hibernation, but I'm wondering what number is considered "dangerous". I've heard 30 means 911?

Erin - I can easily create a background color of white fading down into scarlet, but could not find a ribbon shape into which to insert it, and my hand is not steady enough to freehand the outline (thanks, POTS). How would you produce the ribbons anyway?

I'm wondering about this because, although my sleeping heart rates used to be in the high 50's, now with my meds to lower my tachy they are consistently between 40 and 42bpm while I sleep (the lowest recorded thus far was 37bpm). How low is TOO low?

Hi Dianne. Welcome. Just click on "ADD REPLY" all the way on the bottom.

Oh I agree Elfie. When I first acquired POTS two years ago (it was on sale) the sweats started something fierce, sometimes out of the blue while lying down and always when standing or sitting or exerting myself. But a few months after I started taking Mestinon (which was two months after starting Midodrine) the 'out of the blue' night sweats became more frequent and severe.

Those of us who have taken Midodrine are familiar with the chills, shakes, and shortly thereafter sweats that it causes. Those of us also on Mestinon (me) have discovered that it takes the side effects of Midodrine and enhances them (Cat_Lady?) We're told that the effects of those meds only last up to about four hours and, while that may be true and we do not take them before bedtime, something somewhere in my brain is advising me to suspect the lingering effects of those meds to be causing (or at least exaggerating) the night sweats. Or it could simply be that my POTS is getting worse and I need cooler temperatures.

Or, issie, I could be going through... mAnopause? Seriously? I've never heard of that. But then again all of our bodies, male and female, are just a bunch of chemicals interacting with one another so it would be silly to assume that only women go through changes like menopause with aging. Thanks. I'll look into that.

Kristen - That is my wife, from menopause. In a way we're more in sync because now we both prefer the air conditioner set at 68F. What used to be Brrr is now Ahhh.

My stomach is certainly not the same as it was before I got POTS, much more rumbling, slower pass-through and inconsistency. We've all experienced nausea caused by a virus or something we ate, but to me these are different. It seems as though the nausea is severely exacerbated by the pain of the headache when standing up or overexertion, and when I lie down and the headache subsides so does the nausea shortly thereafter. I am convinced they are linked. I've hurled many times from that pain.

That started happening to me too over the last couple of months and I'm also fairly certain it's not due to menopause, but I'll have to ask my wife to be sure.

I've been suspecting it's from a combination of some of the meds I've been taking for a long time (the last three meds on my signature were just added on Monday) specifically Midodrine and Mestinon, which I've noticed do loopy things to my temperature control, including the sweats and chills. I noticed you take those two also. Just a thought.

Not much to add... Get a TTT and find a doctor who is familiar with POTS, if not a specialist. I realize the good ones are few and far between, especially up yonder. Have you checked the physicians list on dinet? And definitely start by doing your own poor man's tilt - blood pressure readings are good if you have a bp monitor, but more important are heart rates. Have someone with you to take your pulse (or preferably, use a chest-strap type heart rate monitor watch) and to write them down for you every minute, while you just stand.