Simmy

Sorry Mirry, I thought that was a rhetorical question. Will your symptoms ever go away? I don't know, it depends on many factors. Statistically, the younger you are the better your chances of recovery, or in some cases, remission. In some ways my meds are effective in lowering my overall heart rate and boosting blood pressure, but now I have to deal with nocturnal bradycardia and an overall all-day dizziness. Unfortunately, since we're in the early stages of awareness and there is yet no known cure, most will have this for life and must learn to manage their symptoms and live with it. After all, the only other alternative is to go on the Dr Kevorkian diet plan and I'm not quite there yet. How's the squatting working for you? Reen - Dropping your purse is a good idea, like my checking the lower shelf in the checkout line, but that doesn't last long. How about accidentally knocking over a display case and squatting to pick everything up? I recently posted about people constantly asking me if I'm OK and others giving me funny looks when I squat, so I came up with a design on a T-shirt that should help alleviate that problem. Here's the link: dinet.ipbhost.com/index.php?showtopic=15006 Tearose - If only they had chairs at checkout lines we'd be OK. My doctor also recommended the compression hose, I think 30-40, and I tried them, but just putting them on exhausted me too much to make them worth it for me and they were also painful on my bloated belly. Lieze - Doesn't matter what I'm doing - shopping, walking the dogs, laundry, house work, or just talking, if I get the nasties and can't lie down there's always squatting. It works great for me. Emma - Me too. When I first became ill two years ago and had no idea what was going on, although I hadn't yet discovered squatting, I knew I felt better when my head was lower to the ground so my wife purchased a rolling walker for me to kind of lay down on for trips to the bathroom. Whatever works.

I also have hypo-pots with blood pooling and know what you mean. You can walk through the store with only minor head pressure, the heart rate is not too extreme and you almost feel normal, then you stand and in less than a minute everything changes, your brain lacks for blood and you can't think properly, followed by 'oh no'. After many trials and many errors I've found that squatting is THE very best method (next to lying down) to instantly lower heart rate and lessen headache and dizziness. I believe it's called a 'frog pose', with knees bent all the way, calves touching thighs, and balancing yourself on your toes (not flat-footed). This physically compresses the leg blood vessels and shoots the blood upward. At first I was too embarrassed to squat in public, so like you I tried squeezing the leg muscles, or leaning over the shopping cart, but nothing worked as well as squatting. I finally came to realize that I was limiting my relief because of what I thought people would think of me, which is when I decided my physical well-being is more important. Now I squat in public, anywhere, anytime I need to and that allows me to extend my outside time. A word of caution though, getting up from a long squat needs to be done slowly and gradually to avoid an immediate heart rate spike.

There is nothing to be gained by fighting it and staying upright. Squat. That'll give you a few more minutes.

Mary - I didn't know you were in Canada. Now I understand. The substitute I mentioned, Desmopressin, was to replace DDAVP, not Midodrine. I take Desmopressin to help retain fluid, it's not a vasoconstrictor like Midodrine. I only mentioned it as an example of a generic that works well for me. Midodrine is the one med that works best for me and I know how important it is, so if you can get the word out via the media, I say go for it. Maybe you guys can temporarily import drugs from us, instead of us always trying to get them from you. I hope this doesn't affect my CanadaPharmacy Nicorette deliveries.

Sounds logical. You're brain is constantly attempting to maintain proper blood flow by adjusting heart rate and blood pressure accordingly. A good analogy is a garden hose - if you want the water stream to reach your far-away flower bed (brain) you can accomplish it in one of two ways - either increase the water flow rate (heart rate) or use a thinner hose which increases (blood) pressure. Since the same goal can be accomplished in two distinct ways, the brain recognizes it and when one goes down the other rises to keep what it believes is equilibrium. Based on a recent poll taken by noodlemaster, it seems that about 40% of us have hypo-pots, 40% hyper-pots and the other 20% no-bp-change-pots, so there is no 'typical' pots and we're all in the same sinking boat. What you're referring to is called a low pulse pressure (the difference between systolic and diastolic - upper and lower numbers - feed and return). A normal pulse pressure is about 40 (ie. 110/70). When it gets below 20 many become dizzy and some pass out. The lowest I've personally recorded was a 96/82, or a 14pp, which turned my legs into jelly right quick.

I've been taking Midodrine 10mg 3x for a few months now, and as a matter of fact just refilled my Rx of 90 yesterday at CVS with no problems, so I haven't noticed a disruption. I wonder if it's a local delivery problem in your area. The only one of my four meds that is a substitute is Desmopressin for DDAVP, and it seems to work as it should. I hope you get this resolved quickly, I know what it's like when I miss a dose.

Yes, things have definitely changed and daily life is completely different now. A good analogy is Locutus of Borg... "Resistance is futile. Your life as it has been is over. From this time forward you will service pots." (It helps if you've seen the movie) Seriously though, welcome. We know how you feel. Mine came on suddenly about two years ago and by now, through experimentation and advice from others here, I've learned my limitations and what to avoid, and discovered my new best friend, squatting. It helped me when I came to the realization that someone who does not suffer from this debilitating illness can't possibly comprehend what it's like for us to do the simplest things, like stand, unless they can somehow see the effects. That is why I'm a strong advocate for chest-strap-type heart rate monitor watches. You can get one for less than $60 and it clearly displays, for all you wish to see, the only visually identifiable symptom available. If someone gives you the old 'yeah right' roll of the eyes, show them your heart rate standing and ask them to match your heart rate by running in place... give it a couple of minutes. I always hear my pulse in my left ear anyway, so sometimes I sing a song in my head along with the beat. When I'm lying down it's a soft, mellow ballad, or reggae. When I'm sitting it's more like pop or hip-hop. Unfortunately, when I stand up the music changes to punk rock or heavy metal. Ahh, no wonder I get headaches from standing up.

Thanks everyone for your input. It looks like so far #3 is the winner, followed closely by #2. My initial thought was to put #4 on the back and #2 on the front. True, I'll have more inquiries by wearing it, but it's for a good cause and at least people will realize I'm wobbling or squatting for a legitimate medical reason even without the need for words, and honestly it's the weird stares that I hope to minimize most rather than conversing with polite people. No, I'm not a graphic artist, but thanks, it's just something I've been playing around with over the last few days using an old version of Microsoft Publisher. If I was, I'd probably also be able to figure out how to post a poll with embedded pictures like Michelle's logo contest. I was originally thinking about a T-shirt with a statement like... "If I'm squatting I'm OK, I have Postural Orthostatic Tachycardia Syndrome. If I'm face-down on the floor, please call 911" ...but I think the images are better. Tearose - I actually hadn't thought of the bottom one looking like 'fainted', I meant it as 'lying down for relief', hence the green. I'm glad I asked for input. I guess they're somewhat interchangeable though. I had no intention of selling these, I just wanted to make a few for myself, but if you have a connection with someone who can make and sell these for less than I would spend online, I'll be glad to buy a few from you Again, all the images are free for anyone to use as they wish, and if you'd like a copy of the full-size originals in .jpg, or .pub format (if you want to modify it), just send me a message with your email address.

I?m getting tired of people constantly asking me if I?m OK when I go out and need to sit, squat, or lie down for a few minutes here and there, so I came up with a few designs for which I?d like your opinion. I?d like to place the best one (or a combination of two) on the front and back of some T-shirts for myself, in hopes that it will immediately get the message across to the viewer that I?m doing what I?m doing for medical reasons, and I?m not drunk, stoned, or in need of 911. You can see the 4 designs, RYG1 thru 4, here: http://www.flickr.com/photos/simbofats/set...57623764891897/ Which do you think is best at getting that point across quickly? Also, please don?t hesitate to make suggestions for changes, all ideas are welcome. And of course, they?re free for anyone to use. Thanks, Simmy

I hope the type you ordered is one that uses a separate chest strap, it's the most accurate and can show you trends. It's not set in stone, but most knowledgeable doctors will diagnose POTS from either a rise of 30+ OR exceeding 120. For most of us with blood pooling, walking is easier than standing because the motion keeps the blood flowing, it was likely that incline that wiped you out, like hills and steps do to me. I now use a shower stool and that helps a lot. And be aware that holding your arms above your head (washing hair) also raises your heart rate.

Welcome to the place where everyone believes you. While you may not suffer from all the symptoms listed, I don't think any of us do, there are just so many. However, you certainly seem to 'pass' with flying colors based on your TTT, especially with that low bp and then the drop to 50bpm lying down again. While it's difficult to keep track of your own bp, heart rate is easier, especially with an inexpensive heart rate monitor watch. Does yours always jump up more than 30bpm when you stand? If it does consistently, and also drops consistently when you lie down, then anxiety is likely not the MAIN cause of your symptoms and hypo-POTS seems (to me) more likely. Remember, many of the tests you're taking are while you're lying down or at least sitting, and that's when symptoms seem to disappear.

Me too. It starts on the top of my head and spreads to the two sides of the back of my neck. At its worst it also spreads to behind my eyes and pounding in my left ear. And yes, it does indeed feel like a tightening rubber band. An ice pack is the only thing I've found that seems to help.

Yes, it is worn over a T-shirt or light clothing, although it can also be worn over bare skin, but then it would obviously need to be washed more often. The model I got from Coolsport, the Cool Vest Lite, is adjustable and quite comfortable and can be concealed under loose clothing. The vest, with one set of cool packs was $160 plus shipping, and an extra set of cool packs is $100.

Well, I just received my new Coolsport cooling vest today. That was fast. The fit is great, nice and snug if I want it to be. Totally adjustable with eight Velcro straps. Very soft and comfortable fabric too. Too bad it's a beautiful, cool, dry day today and I'm feeling better than I have in months. (Did I just say that?) I'll get back to you when it gets hot and yucky again.

Thanks Reen, but although the deepest part of Howe Caverns is 200 feet deep, you begin descending from 1,100 feet above sea level, so that won't do either. I still maintain that higher pressure is better for us than low (especially if you also suffer from blood pooling), but that you are probably right too - a substantial 'change' in pressure in a short amount of time, whether up or down, worsens our symptoms, and a more consistent weather pattern is best. But if I could design my own weather, it would be cool, dry and high pressure, like we're having now. Yogini - It may have been the salt too, but wasn't that amazing? It felt great to walk upstairs to my bedroom last night and then get undressed while still standing up. Yay! I think Reen and BelieverEM are right too though, because this High we're under now moved in gradually over a few days and not suddenly, but once it topped off at 30.60, what a feeling.

That's OK. Dyslexia is probably somehow related to STOP too. We all knew what you meant to say I had the same question about a year ago and was advised to stay away from novocaine because the epinephrine would likely raise my heart rate. Fortunately, my dentist was familiar with POTS (blew my mind) and had lidocaine containing no epinephrine, which worked well enough to numb the area. I also refrained from taking nitrous oxide gas because my brain was already scrambled enough from all my meds and I was concerned of the possible interactions. Good luck.

You've already mentioned everything I do to combat low blood pressure, except for compression hose, that is if you also suffer from blood pooling like I do. I'm sorry Midodrine doesn't work for you, my 10mg x3 has worked rather well at keeping my bp from dropping too far, along with Mestinon.

OK. So who in the northeast is having an abnormally wonderful day today? Since this thread died I thought about not thinking about barometric pressure for awhile, but yesterday I felt good and today... wow! It's almost like being half human again I checked the barometer and... wow again! 30.59. I have never seen it go so high. Humidity is only 29% and it's a cool 56. And no one today told me to "have a nice day." I'm having one anyway. Harumph! I hope you are too.

BellaMia - Thanks. Yes, it comes with a chest strap transmitter, but it's really not that uncomfortable for me. I imagine it wouldn't feel that much different than the bottom strap of a bra. I've even slept with it many times to record my sleeping heart rates (using a different device called a SmartSync Heart Rate Data Logger that receives the signal and records up to 30 hours of heart rates... Amazon - ten bucks!) Mine is a Polar heart rate monitor watch, which came with the chest strap and cost about $60 at modell's back in '08. It's always accurate, except when I twist my body in such a way that part of the chest strap loses contact with the skin momentarily, but that's rare. I've had to change the battery in the watch once so far, but the chest strap battery is still going strong after a year and a half, and I use it a lot. I'm sorry that your skin is so sensitive, but if you can wear a bra, you should be able to wear this. The huge benefit of the chest strap type is that it not only gives you your heart rate now, but also realtime feedback on trends, like you saw in my videos. With the 'place fingers here' devices you only get a one-time measurement, with no idea of trends, up or down. I highly recommend the chest strap type, Polar and SmartSync, along with videotaping your own symptoms for documentation purposes.

Rav - Yes, your plumbing schematics are a bit more complicated than mine in that area. The most noticeable benefit I feel from the Midodrine is actually what it is advertised to do - boost blood pressure. Over the last few weeks I've come to recognize effects of what I believe are directly attributed to Midodrine, like those chills we're all familiar with by now, that they seem to get stronger when I stand or perform tasks requiring exertion, but I'm also now able to do those things for a little longer before the headaches and dizziness become too severe to continue. I'm sure this next benefit is due to the combination of drugs I'm on, mostly the Midodrine and Mestinon, but now when I stand, my heart rate goes only to about 100bpm and then settles into the 80's and stays there for a few minutes before shooting higher. Of course this effect lasts for only an hour or two after taking my meds, at other times my heart rate does close to what it did before the meds, like hit 130+ when standing. The best way for me to explain the benefits is to show you, so go to Youtube and search for "simbofats" (my brother called me that when I was a fat baby) then click on each of the two watches marked "POTS - 18 months later - 90 minutes after meds" and then "...5 hours after meds" to see what I mean.

I just ordered my white, CoolSport Cool Vest Lite, in supplex nylon. The only size available in this 'concealable' model was "one size fits all", but based on the pictures it should provide ample coverage for my small frame. It should arrive by the end of the week. Total price with shipping was $186. I'll keep you informed.

Correct. I'm remembering now what I learned about it two years ago. The pheo releases a burst of norepinephrine (or epinephrine?) at whim, which shoots throughout the body and especially at the heart, which causes the tachy, which then causes the sweating and headache, but it is not relieved by lying down. I took two, standing norepinephrine blood tests, along with two separate 24-hour urine collections to rule out pheo.

I was actually first thought to have pheo when I had my second hospital visit after this all started for me in 2008. Only one of my three specialists there (and I use that term loosely) had any clue or desire to investigate any possibility other than anxiety. Anyway, he suggested pheo and that's what led me to DINET after searching my symptoms, which as you said are very similar to those of POTS. As far as I know, the main difference between the two is the POSTURAL tachycardia. Does your heart rate increase more than 30bpm when you change your posture from a lying to a standing position? I don't think that happens in pheo, but I'm not sure. Have you tried a poor man's stand test?

Since we're all adults here, I guess I can join too. Right after I started Midodrine I also felt the tingles, chills and hair standing up all over my body. I don't know if it's a 'male' thing but I never experienced painful nipples, although they do get very hard from the Midodrine and definitely uncomfortable. The good news is it subsided after about a month at the same dosage (10mg 3x a day), and now it's minor and almost unnoticeable, but the chills and tingles still occur, especially between 45 minutes and 2 hours after taking it. I've also heard many others reporting the side effects subsiding after a few weeks or so. For me, so far the benefits of Midodrine outweigh the negative side effects.

If you were certain you missed your dose AND it was still before bedtime, you could have taken it when you remembered, because your next dose wouldn't have been until the following morning anyway. If you're not sure if you took it, wait until the next. A missed dose is far better than an overdose. Now that I'm on four different daily meds it's become confusing and yes, I have missed many doses and my heart has skipped many beats. It's all normal. Anyway, since the one thing I always carry with me is my cell phone, I programmed my doses into separate, repeating calendar alarms to ring and remind me at the right time (there are also apps available for download). That works pretty well except for the times I hit snooze, or thought I did, or wasn't sure if I did because I was busy at the time, so I also bought two 7-day pill boxes, one for my morning doses and one for my bedtime Desmopressin. I know with 100% accuracy whether or not I took those doses just by looking at the correct day, and with POTS my memory isn't what it used to be. Like you, I also adjust my Midodrine doses throughout the day (10mg, 5mg, or none) depending on my expected activity level for the coming four hours, and my 2nd dose of Mestinon is in the evening but not at bedtime, so for those I rely on my phone and adjust times accordingly. Of course whenever I go out I also carry a portable, small pill container, holding a bunch of Midodrines and a few of each of the others, just in case.