Simmy

That happens to most of us, especially if you also suffer from blood pooling. Bending, lifting, carrying heavy weights, climbing stairs, or simple over-exertion causes all of the wonderful symptoms. It has to do with improper return blood flow from your lower body to your heart. For me, whenever I feel the nasties coming on I squat, which instantly pushes or squeezes the trapped blood in my legs back to my heart, which immediately drops my heart rate by 40bpm or more in mere seconds and stops the headaches. Getting up from a squat is tricky, I straighten my knees but keep my upper body hunched over with my hands on my knees for a minute before straightening up.

Me too - skipped beats, pounding, tachy, brady, slow 'swooshes', stinging, sometimes it feels like it's squeezing through my ribs... the average person would have no doubt they're having a heart attack. To me this is all just my new normal. Thankfully, I have a strong heart capable of handling all that it is put through on a daily basis.

All of that was valuable information. Thanks all. I've decided to get the CoolSport. I also checked out some backyard misters and they're pretty inexpensive and definitely a good idea. Thanks again

I'm preparing for summer. I've looked at the models at Coolsport.net and Coolvest.com and I'm not sure which is better. I'm interested in the concealable type. Have you used either? Would you recommend yours, or another one? Thanks

I'm on Mestinon now too, but the side effects I've experienced from it have been mostly nausea and stomach cramps. Oddly though, I had the same tingling and itching especially on the back of my scalp, along with hairs standing up all over my body even in places I never knew I had hair, but that started shortly after I started Midodrine a few months earlier.

Well Kimi, other than from certain meds like Midodrine and others, I'm not familiar with any cases where someone with POTS stands and DOESN'T have a substantial increase in heart rate. At my very best it's still at least >25, at worst >80, and that's with meds. Unfortunately there are many fine lines separating this syndrome and other illnesses, and often they intersect. Have you confirmed your heart rate fluctuations, like with a heart rate monitor? That's an essential tool for me.

What role does posture play in how you feel? Are your symptoms always worse standing and better lying down?

I look at it in two ways. If I'm doing all the basics you mentioned, and the weather is cool and dry, overall I feel better... but the weakest link is my posture - even on my best days I can only stand for five or ten minutes before I need to squat or lie down. However, if the 'basics' are there and I'm horizontal I feel great. On the other hand, on bad days, even doing nothing and lying on the couch the palps are stronger, chest is heavier, brain fog plays games with me and standing for more than a minute tightens the brain clamp.

Me too. Yesterday was 92 and today in the 80's. I also thought maybe this summer will be different and I'll handle the heat better, then I stepped outside and felt (and probably looked) like a zombie. I didn't have the energy yesterday to walk upstairs in the afternoon and turn on my bedroom air conditioner, so by the time I went to bed the room was 85 and it took a few hours to get down to a tolerable 76. The pounding headache finally went away around 3am. Gotta remember to set the timer on the air conditioner on hot days, and I'm considering purchasing one of those cool vests for when I need to go out.

Heat intolerance is a big one for me too. Like the others, I also take only luke-warm showers and a hot car in the sun is the worst. I also have difficulties adjusting to the cold, but for me heat is worse.

From Webmd: "Pyridostigmine (Mestinon) is used to improve muscle strength in patients with a certain muscle disease (myasthenia patients with a certain muscle disease (myasthenia gravis). It works by preventing the breakdown of a certain natural substance (acetylcholine) in your body. Acetylcholine is needed for normal muscle function." My doctor prescribed it to me to help the leg muscles push up the pooling blood. I was on 60mg 3x, but the nausea and abdominal cramping became too severe, usually about 90 minutes after taking it. I cut back to 60mg 2x and that's better for me. I also take Midodrine, a vasoconstrictor, 10mg 3x. The combination of all of my meds have helped my blood pressure become somewhat more stable and have overall lowered my heart rate by about 20bpm, but the >30 and head explosions when I stand still remind me who's boss. The worst side-effect of the meds for me is this all-day stuffy head and overall yucky feeling that I think I can attribute to the Mestinon. I'll try it a little while longer and decide if the benefits outweigh the yuck.

Or should we call it PFYS?

Julie - I've heard the comparison mentioned too, about us and altitude sickness, and I also drink over two liters of Gatorade a day and am dehydrated. There is definite oxygen deprivation occurring even at sea level, when pressure is low, although nowhere near as much as at high altitudes. When pressure drops, so does total oxygen inhaled with each breath. I'll explain below. And thanks for the link, that was cool. Chaos - You made a very common error in the 3-day barometric pressure readings for your area - those were the "reported numbers" as you may have heard on the news or the internet. Those numbers are adjusted to sea level, regardless of altitude, so a 'nice day' at sea level would read the same as one in Denver. They do not account for altitude, so you must do that on your own by either checking the pressure yourself using your own barometer, or deducting (about) 0.1 inHg for every 100 feet in altitude, or in your case at about 5,000 feet, 5.0. So your actual true barometric pressure ranged from about 24.67 to 25.40 - a humongous difference as you can see. Put another way, where air density is 1.00 at sea level and 0.00 beyond the earth's atmosphere, at 5,000 feet it is 0.86 - you've lost 14% of the air and, along with it, 14% of the available oxygen to breathe because the ratio of elements in the air remains more or less constant regardless of altitude. At 15,000 feet it's down to 0.64 - one third of the air gone, which causes altitude sickness. Even the nastiest of hurricanes, call it a 28.50 inHg, is equivalent to a nice day at only 2,000 feet, so altitude can be much worse on us than even the worst storm. Then again, it could be the drastic drop in pressure in a short period of time - whether by weather, airplane, or ascent of a mountain that causes problems, but once you're at and remain at say 5,000 feet, your body adjusts? Or, as some are suggesting, it's the dryness that's so good. Or is it PFS? (Pink Flamingo Syndrome)

Valliali - First, sorry to hear about your dad's health, I wish him well. I should have asked this of you earlier, since there are so many forms of POTS, which are you? If you're like me - hypo with blood pooling, then I can't make sense of your body's reaction to lower pressure. On the other hand if you're hyper, it could have the exact opposite effect (like salt intake needs) and make sense after all. There is something to be said however about dry heat being much more easily tolerated than moist heat, I definitely agree with that. For me, ice packs on the back of my skull and neck helps my head pressure on those nasty days.

Valliali - You are a conundrum. Nothing about what you said makes sense, but I believe every word of it. Trying to figure out causes of our symptoms is certainly frustrating enough, but then you gotta go and throw a monkeywrench in the middle Maybe California's more temperate climate, as opposed to the ever-changing climate of the northeast, has benefits. 7,000 feet and you felt fine? - that's mind-boggling to me, but logically there must be a physical reason for this. As I mentioned earlier, most of us feel worse in higher humidity, so perhaps the very dry New Mexico air is so beneficial that it negates the potential harmful effects of lower pressure. It could be a smaller concentration of pollutants in the air, like CO2. Then again it could also be because it was Tuesday and a flock of pink flamingos flew over a yellow sailboat exactly 2,873 miles southeast of you. This is POTS, it could be anything.

My symptoms are quite similar to yours and I'm sorry to say mine have progressively gotten worse in the 20 months since this first began. Only a few weeks ago the nausea and cramping became much worse too, but that might be due to the addition of Mestinon. On the other hand, overall I feel better than day one because of all the meds I'm taking, but when I forget a dose I'm back to my worst, plus some. Remember though, we're all different and also keep in mind the younger you are the better your chances of recovery, or in some circumstances complete remission. I'm very happy with my PotsDoc, who I found right here on Dinet. If you're in NYC he's about 40 miles from you in West Orange, NJ. Dr. Nicholas Tullo, Consultants In Cardiology. 973-467-1544.

I can't attribute it exclusively to the Mestinon, I'm sure it's a combination of that and Midodrine and the other meds, but lately some strange things are happening. Now when I stand up, instead of my heart rate rising from 65 to 120 and increasing, it still goes up from 60 to 110 but then drops into the 80's and stays there. It has helped the tachycardia but not the headaches or dizziness though. And this strange drop only happens between 90 minutes and three hours after taking the meds, when the effect is strongest. I'm not sure yet if the benefits outweigh the nausea, but it's not terrible so I'm still trying.

I started my Mestinon 40 days ago, at 30mg twice a day, then increased it a week later to 60mg twice a day. 10 days ago it was upped to 60mg three times a day. I hope for you that I'm not typical but I still become very nauseous about an hour after taking it and that lasts for about two hours. Sorry.

MM has it right. With everything we start small, see how it feels and adjust accordingly. Personally, I haven?t got a clue how much extra salt I?m taking, I just know it?s a lot, but I check my blood pressure daily (as advised by my PotsDoc) to make sure it doesn?t get too high. I?m also male, 5?10?, 160lb. (72kg), with classic 30+ POTS and blood pooling, with possible O-Hypo. After a while I?ve learned to recognize the signs that my body needs extra salt ? I can feel the difference in how quickly the blood drops into my feet when I stand, depending on my activities and how recently I took my meds. Some people just munch on salty snacks throughout the day, others add tons of salt to their food, some take salt tablets and still others (like myself) literally pour a salt shaker or salt packets directly into our mouths. Either way, remember to always include lots of water. The combination of both is what boosts blood volume.

That's been happening to me too lately, but not in the face, just feet and hands. For the last couple of weeks I've been accompanying my wife on her dog walks and it has started to set in after about ten minutes of walking. It happened again while we were out shopping, again after about ten minutes of walking and standing. At its worst the bottom of my feet became so numb that I couldn't feel the floor as I was walking, thankfully holding on to the shopping cart. It felt like when you're climbing stairs and you get to the top and you think there's one more step, but there isn't. I don't know if it's due to my recent increase in Midodrine, my recent addition of Mestinon, or more likely some combination of the two. It is odd that it began happening shortly after these medication adjustments, and that it coincides with strange, unexpected and intermittent drops in my heart rate lately while walking, which I'm sure is due to the new meds. The paresthesia is also always accompanied by extreme dizziness. I'm seeing my PotsDoc next week. I'll be sure to ask him.

For the first three or four months of my illness I couldn?t get out of bed much so I didn?t work at all. For the last 18 months or so, I?ve managed to put in a total of about 200 hours (out of about 3,000 hours available). I?m lucky in that my boss has allowed me to come to work whenever I feel well enough to try. I install security systems and the work is very similar to that of a construction worker, but my boss was kind enough to assign the lightest work to only me, like sitting in one spot and hooking up wires to control panels, but even that wipes me out after only an hour or two and I become too dizzy to even sit. On most days, however, I don?t feel well enough to even attempt the drive. I finally applied for Social Security Disability Insurance last week and am hoping to get an answer within a few months. Cat Lady ? I imagine it would make things easier on you if your co-workers knew what you suffer from and were able to recognize your symptoms, but I don?t know if you want that information revealed. That?s a tough one. Good luck. I hope it goes well. Frank ? When I do attempt to drive to work I always start out with a quick thought? ?It?s 103 miles to the job site, I got a full bottle of Gatorade, it?s dark, and I?m wearing compression hose.? Then I hit it

Dakota ? I just looked up the Lackawanna coal mine in Pennsylvania, on Google Earth. The entrance to the mine is actually 992 feet above sea level, so that won?t do. Thanks for trying. I don?t know very much about mines or caves, but they all seem to be located well above sea level to begin with, which I guess is nature?s way of creating them in the first place. It looks like my only other alternative to get well below sea level is to jump into a volcano. I?ll let you know how that goes when I climb out (I don?t think I?ll have a good cell phone connection inside). McBlonde ? I know. Whenever I shower now, it?s never with hot water anymore. Even just washing my hands with hot water gives me the pumpity-pumps. I imagine it?s not that comfortable to bathe in lukewarm water, huh? Sorry to hear about your headache, but it looks like today is a slightly above average pressure day for you in LA. The inversion table sounds familiar. After I climb the stairs to go to my bedroom at night I lie on my stomach flat on my bed, with my head hanging over the side, and that helps to relieve some of the symptoms temporarily. Nikki ? I also felt that coming on yesterday and it?s gotten worse today. I?m in Northeastern New Jersey, so we?re under the same Low. Right now it?s 29.47 here, not terrible, but not good either, but tomorrow looks better for us. A good online barometric pressure map I?ve found is located at: http://www.usairnet.com/weather/maps/curre...etric-pressure/ Unfortunately, instead of displaying measurements using Inches of Mercury (inHg) it uses Millibars (mbar), so the numbers can be confusing. All you really need to know is that, at sea level, an average day of 29.93inHg is equal to 1013mbar, high pressure of 30.30inHg equals 1026mbar, and a hurricane's Low pressure of 29.00inHg equals 982mbar. Remember to adjust your numbers based on your altitude. Just a quick glance at the map gives you a good idea as to where the highs and lows are. The very center of any of the ?fingerprints? is the ?eye? of that particular Low or High pressure system. I hope that helps.

Like yourself, before I figured out I had POTS I went to two emergency rooms and many doctors. At this point you and I probably know a great deal more about our medical conditions than most doctors in the ER, so unless I'm suffering from a new or more severe symptom than normal (my new POTS normal) I'd avoid going back. Only your doctor can tell you what your personal 'dangerous' low or high blood pressure or heart rates are. I hope you feel better.

Ever since I first began feeling symptoms almost two years ago, one of them was what I always referred to as 'heart stinging', not really painful, but definitely unnerving, kind of like a mild bee sting, or a pinching. I've felt it happening mostly right after over-exertion with lots of tachycardia, like after climbing a flight of stairs, carrying something heavy, or standing for a long time. I can only say it's similar in how it feels to muscle strains I used to get after a good workout.

I just received my copy last week. It covers dysautonomia as a whole in many aspects. The DVD I think is meant more for family members and others who are not very familiar with the condition, as it can educate them as to the multitude of symptoms and range of disabilities, as opposed to educating us who already know. Personally, I believe it was produced well and gives the viewer a good idea of what we go through on a daily basis and how our lives have changed. The only thing missing is the only plainly identifiable evidence of the illness (for most of us) - tachycardia. It would give the viewer a more realistic understanding if they could see, for instance, a heart rate monitor in the corner of the screen jumping from 60bpm to 120bpm or more just from standing up, while watching the person doing it, or climbing a flight of stairs, etc. Maybe the next DVD will include that. Buy it. The fifteen bucks goes to a great cause.