Simmy

I have classic hypo POTS with near-syncope, but have never actually passed out. On good days I'm able to drive my wife to the ferry that takes her to work, about 10 minutes from my house, and make it home OK. On rare, great days I feel well enough to drive her all the way into Manhattan, about a 45 minute commute, but that's my limit and I then park and lie down in the car for awhile before returning home. I've found that reclining the back of the seat to near 45 degrees while driving allows me more time behind the wheel... and I'm sure I look real rad and hip. Anyway, today I woke up and felt as though it was a 'great day', so we got in the car and off we went. Only about two minutes later I said "Sorry honey, I'm taking you to the ferry, I'm feeling yuck." My chest felt heavy, I was having trouble finding the pulse in my neck which is usually obvious, but once I did it was fast, feet felt heavy and tingling, both hands got numb, an instant headache got very bad, along with near-pukopy. All of these symptoms are normal for me when I stand or sit for too long, or from over-exertion, but what happened next was disturbing. Within another minute or two I realized I wasn't going to make it to even the ferry so I was looking for a place to pull off the road when my entire left arm started numbing, I became very dizzy, and this buzzing sound and feeling in my head got louder and louder, like a beehive in my brain. I pulled into a driveway, put it into park, opened the driver's door and literally spilled out onto the pavement. In less than 10 seconds it all went away (except the headache, but that got better with time). My wife drove me home. How close was I to disaster?

For Reen http://www.flickr.com/photos/simbofats/460...57623764891897/

Thanks TX. I'm at my doctor's office now. I'll speak to him about what you suggested.

TX - Quote: "I would like to see standing catecholamines, aldosterone, and renin added as standard labs." I happen to be going to my GP tomorrow for an unrelated matter. Are these blood tests something he can easily do, or do I need to go to a lab for that? Thanks

This may not be related, but ever since my POTS started, during or after any activity where I overexert myself I yawn and it's not a normal 'tired' yawn, it's more like many quick yawns in the time it would normally take for a normal one, a few times. I'm assuming this is my body attempting to get oxygen back into my brain.

I'd vote for whichever one allows you to exercise at more horizontal position, I'm guessing that would be the recumbent bike, which should enable you to exercise longer.

Hi Dawnie, My doctor added Mestinon about 3 months ago, to my Verapamil, Desmopressin and Midodrine. He started me at 30mg x2 and gradually upped it over a month to 60mg x3, but shortly thereafter I dropped it to 60mg x2 because of the worsening nausea. I still get an overall nauseous feeling from it, especially about an hour after taking it, along with an all-day dizziness that I did not have before starting it, but it does seem to help keep blood pressure up slightly when standing after taking it. For me, however, the good effects only last for an hour or two and I think the benefit no longer outweighs the yuck. I'm considering stopping it altogether, but that's just me. Many have great success with it, some with little or no side-effects. Good luck.

Funny. I've been asking (myself) the same thing for awhile, but I guess I didn't want to seem ignorant in the company of 'experts', and I mean that in a good way because you guys are incredibly knowledgeable and I'm grateful. But yes, me too - I had a TTT and an echo, along with about 20 EKG's (every office visit with my cardiologist / PotsDoc, always lying down... what's the point?) and every visit is to see how the latest meds are working and maybe tell me about a new one, like the latest addition, Mestinon. Any suggestion to look into anything else is always mine. I haven't had even a blood test of any kind in a year and a half. I think we're missing something and I'm glad you asked.

Although the show didn't go into great detail of symptoms and proper diagnosis (and a few other inconsistencies), the concept of 'standing or sitting up causes faster heartrate' was made clear, "POTS" was mentioned many times and the full name of the syndrome was also stated, and that'll certainly help with awareness. I doubt anyone watching the show made the erroneous assumption that one must be gay to have POTS and I'm certain that sexual orientation has nothing whatsoever to do with the syndrome. We are all homo sapiens and our common enemy is and should be POTS, not someone who is different. We, after all, are unlike 99.7% of the general population. I wouldn't worry about a new doctor thinking you're a hypochondriac either, especially if you were diagnosed before this episode aired. The show is simply confirmation that the syndrome exists and is real - something many of us have been struggling to prove to others for a long time. I believe it is season 6, episode 19 or 20, called "The Choice". It is being rerun in America on the USA network, on Thursday, May 13th, at 11pm Eastern time. You can also see it at fox.com/watch/house about eight days after the initial airing. It's not up yet, but should be in a day or two. This is a good thing. Thank you, FOX.

Thanks Reen, for the suggestions. I'll definitely tone down the blackish color of the stoplight, that's a good idea. I also agree the main focus should be on the back of the shirt, with the front being 'bonus advertisement space', and that some additional wording might be needed on the back that briefly explains the symptoms, but I don't want it too wordy. I think the image is self-explanatory in regards to 'vertical posture equals faster heartrate', and anyone not recognizing the lines to be those of a beating heart is probably also incapable of interpersonal communication. And another thing... when did POTS become PoTS and why wasn't I asked? Who decided to drop Orthostatic? Didn't House use all four words on last week's episode?

Quote - "I've taken the 4th one to put on my fundraising page- hope you don't mind :-) ... Would you mind if I got in touch with the UK Syncope Trust about your designs?" Mind? On the contrary, I'm honored.

First, Tara, welcome. You are not alone. Reading your story felt like I was reading my own, except for the childbirth thing. It always starts out as an anxiety diagnosis with all tests 'normal', until we do our own research and show the evidence. It's like we're guilty until proven innocent. I'm glad you discovered the truth. I can imagine your new doctor wanting to see the results of your TTT while still on your medication in order to compare them to a TTT without meds, but you've not had one before and it doesn't sound like there are plans for another one after some time medication-free, so I'm confused too. It sounds like the Effexor is working well for you when you're on it, how bad are the side-effects? The only advice I can give you is to make certain you are lying down on the tilt table and relaxed for the FULL 15 minutes before they begin to raise you, to get the most accurate difference between down and up heart rate and blood pressure readings. Good luck and I hope you get the answers you're looking for.

Erik - I don't know, sounds like I'd blend in perfectly in that neighborhood and they wouldn't bother bothering me HEnsor - Very cool! It gets the fidgety message through brilliantly. Nicely done. issie - Thanks. I think adding a description in smaller letters on the back is a great idea, perhaps with different symptoms scattered about like I've seen somewhere else, especially since it is mostly viewed by the person standing in line behind me while I'm squatting - captive audience. I do however still prefer the front to have the image as well as the name... for what it's worth Well, I created one T-shirt through zazzle.com and put #4 on the back and #2 on the front a couple of weeks ago and I think it came out great. It's expensive, about $26 each delivered, but I have no other way of making them. It already started two separate conversations about POTS while I was shopping at Walmart, when people asked me about it - once while I was squatting in an isle and again at checkout. Now that the weather is getting hot I'll have to order one more in XXL so I can wear it over my cool vest.

Thanks Nina. I wear it almost every day now if it gets into the 70's or higher. I also discovered the gel packs alone are great for headaches because of the steady 62 degrees instead of an ice-pack's freezing. KeXia - Yes, you could try the junior size. Call them, they'll figure it out with you. It's worth it!

The episodes are indeed debilitating and when they occur, whatever we're doing stops and waits for us to recover, but it's the heart physically stopping and skipping beats that is truly frightening. It's happened to me more times than I can remember, but always during or immediately after a nasty tachy. The 'after tachy' version (lying down from a standing position and going from 130+bpm to 60bpm instantaneously) isn't too bad as it never skips more than one beat. I guess the best way to explain this is visually, where the exclamation point is a heart beat: !..!..!..!..!..!............!......!......!......!......!......! However, the one that really scared me was when I stupidly decided to help my wife shovel snow after the February blizzard and, after only a minute or two of shoveling, my heartrate was in the 180's and skipped many beats at a time, until I squatted: !.!.!.!.!.!...!.!......!.!.!.....!.!.!.!.!............!......!......!......!......! It even happened once while I was wearing a 24-hour Holter monitor and it showed up on the printout, but my cardiologist/PotsDoc said it is nothing to worry about and that it's not uncommon for us to skip a beat or two during extreme tachycardia. It's certainly disturbing and shocking when it happens to me now (especially that weird heavy-swallow-feeling when the heart stops momentarily), but it no longer scares me, it's just my new normal. Stay hydrated, salt loaded and cool, and most of all try to avoid triggers at all cost. When I'm standing in line and I feel it coming on, I squat and I don't care anymore what others are thinking. If they're curious enough they can ask and I'll be glad to explain it to them. And remember to keep a bit of distance between you and the person in front of you on line if you're squatting, you never know who recently ate burritos.

I looked into the ITD about a year ago and discussed its usefulness with my cardiologist. It really does help OI symptoms by creating an internal vacuum with every breath, which boosts blood pressure. It is not too good to be true. When I first investigated the device it was not yet available to the general public so my doctor and I discussed how it works and determined that the same results could be accomplished without the need to purchase anything, with simple pursed-lip-breathing. It's really quite simple and DOES work. Whenever I feel the nasties coming on (besides doing all the other techniques like squatting, salt and fluids) I pucker my lips as if to kiss, then inhale through my pursed lips for 3 seconds per breath and exhale slowly through an open mouth. This is crucial - when inhaling through pursed lips it is important to feel the resistance of the air coming in and adjust the lips so that the opening is small enough to create resistance, but not too small that you're struggling for a breath. After some practice you should be able to find the right amount of pucker to allow you to take one full, deep breath in 3 seconds time, while creating the appropriate amount of resistance, which will create an internal vacuum and bring relief. If you sound like a trumpeting elephant while inhaling, you're doing it right. Repeat a few times and marvel at how quickly your heartrate drops and blood pressure rises. After returning to normal breathing your heartrate will rise again and blood pressure will drop some, but to nowhere near where it was before the "ITD kiss". Try it only if you have hypo, not hyper. Good luck.

I wore it again today. 88 degrees and we were sitting in the backyard. What an amazing difference. We came in after about an hour and I went straight to the couch and fell asleep while still wearing it. Very comfortable. I woke up an hour and a half later and it's still cool. Can't praise it enough.

That used to happen to me too when all this first started. It's somewhat better now with all my meds, but I still can't raise my voice, carry out a long conversation, or sing without becoming lightheaded. Most people don't realize that to simply talk it takes quite a bit of energy and oxygen, both of which we don't have very much to spare. I learned to speak more softly, take slow, deep breaths and recognize when I'm doing too much - talking or otherwise - and rest.

I agree. It's a good idea to carry a doctor's letter prescribing our devices and meds. Well, the weather finally turned hot again and I got to try out my new cool vest yesterday. I'm truly amazed by how well it worked. It's a bit more bulky with the packs frozen than at room temperature and definitely shows through loose over-clothing, but wow, is it ever worth it. It was in the mid 80's and my wife was doing some gardening so I put on the vest and went outside to join her, something until then I was unable to do for very long in that kind of heat. Of course I wasn't able to physically help much, but I sat in the shade for almost an hour and it honestly felt like it was 15 degrees cooler outside. More testing to come, but I'm overjoyed with the initial results. I give it three thumbs up

Soytinly!

Actually, after further reading on their website I found this: "The CARE Medical History Bracelet was designed so personal profile data on the bracelet is your medical history and is a read only HTML file that cannot be altered." ...and I just ordered mine. Thanks Reen.

Reen - That is actually quite ingenious and relatively inexpensive. Thanks. Basically, it's just a portable usb drive with included software, but they made it wearable, medically identifiable, and waterproof. I also like the fact that it looks like a medical ID band. Very cool. It seems you simply enter all your vital information on your pc or laptop using their included software, then upload it to the band and you're good to go. The website did not mention password protection so it is possible that, during an emergency situation, a medical professional could, not only view but also edit your data, but even in that rare circumstance you could always overwrite it with your original data stored on your own computer. I guess you could also use it for visits to new doctors, provided they're in the 21st century too. Personally, I have my info in ICE (In Case of Emergency) on the home page of my cellphone, but that's limited to only the vitals. As far as seeing new doctors, I carry a bunch of folders, but that will change once I get this device. It'll take some time to enter all the data, but it's worth it. Thanks for finding it.

Personally, I doubt that one person is more likely to acquire POTS over another simply because of their vocation, health care or otherwise. I believe it's more likely that those already in the medical field are more likely to recognize and identify their own initial symptoms and continue to investigate treatment possibilities, ultimately ending up here, whereas others are more likely to blindly go along with the usual anxiety diagnosis, take their anti-depressants and never find this place, which skews the numbers. I further contend that those not in the medical profession who have found their way here were either advised to check it out, or found it on their own because of their type A personalities or analytical minds - those who don't take no for an answer and those who think in an 'if-then-else' manner, like programmers, mechanics, teachers and number-crunchers. Hypothetically, if somehow every POTS sufferer on the planet were to vote in this poll, I believe the numbers would closely mimic the ratio between health care workers and others.

HEnsor - Welcome. Gotta love your sense of humor. I agree, as long as you can afford it, you need to use every available tool that helps with your symptoms and enables you to do more, whether you look like Locutus or not When I ordered my vest two weeks ago it was 92 degrees here. I got it just a few days later but it hasn't gotten out of the 60's since! Maybe I'll raise the thermostat to 80 so I can try it out. Nina - Awww. From the mouths of babes. Adults can learn a thing or two from them. A fun moment for me was when I went to the DMV to get a handicap placard and had to stand on line for 20 minutes, but I spent about 19 of those minutes squatting in line and shuffling forward. Not one word from anyone on either line, not even the security guard said anything, but he was staring mightily (this was before I got my POTS shirt). Finally when I got to the front of the line an old lady in the line next to me asked if I was OK, but only after I first caught her stare and smiled at her. It took about fifteen seconds to explain POTS to her in a nutshell, and of course everyone around us overheard, which instantly altered the way they were staring, from judgemental to inquisitive. They can't otherwise figure out on their own why we do such odd things in public and inevitably assume it's for a reason it is not.

I was always thin, 5'10" and 140lbs (10 stone) and could eat anything and everything and never gain weight (which always pissed off my wife). Since POTS started about two years ago I've gained about 25lbs and now, although I've lost my appetite and have to force myself to eat, every little thing I eat goes right to my belly and it bloats, while my weight increases. In the old days, if I went a day without eating I'd lose an easy two or three pounds and I ate about 3,500 calories a day just to keep from losing weight, now I eat less than 1,500 calories a day with a far healthier diet than ever before, and it's a struggle to stay below 165lbs. I'm sure it's due to both meds and lifestyle, along with whatever POTS has done to me. There's nothing I can do about the meds I need to regulate my hr and bp, but I still try to walk on the treadmill for a few minutes at a time, a few times a day, which of course is nothing compared to the enormous daily calorie burn in my former life in the construction field. Then again, my heart gets a fantastic daily cardio workout, shouldn't that count for something?