Simmy

McBlonde - Those of us suffering from POTS with low blood pressure and pooling have all been advised to increase our salt intake to boost blood volume. We're constantly breathing in nitrogen, oxygen and other trace elements with every breath we take, but when in your part of the country it's quite obvious the air is saltier - you can smell it and taste it, so there's no reason to believe that the higher salt content in the air doesn't become absorbed with inhalation. Since higher humidity opens pores, it's also theoretically possible for the salty air to be absorbed through the skin. I have no evidence or quantifiable data to support this, it's just a theory. On a side note, I've heard for years that psoriasis is greatly improved, as are other illnesses, by a visit to the Dead Sea in Israel. I wonder if any of us have been there and noticed substantial improvements, if only temporarily. The location has many advantages, like the outrageously high salt content (higher than anywhere else on earth), well below sea level, and it almost never rains (barometer is always high). Unfortunately it's also very hot there year round (90's to low 100's), so that might negate the benefits. Now my PotsHead is taking it further. I wonder if any of us have found relief by bathing at home with sea salts. Hmmm?

Jan - To answer your question as to whether or not it's possible to change the barometric pressure in your home - technically yes, in reality no. You'd need to seal your entire home, top to bottom, to be completely air-tight, and then compress the air inside by use of a powerful fan forcing outside air inwards with no possible means of escape. Not very feasible. Dakota - Thanks. I'll look into the Lackawanna coal mine. It's 300 feet deep, but do you know how far below sea level that is? I'll try to check it on Google Earth when I have the energy to get to my computer. This is from my phone. Noodlemaster - I'm no doctor or scientist, but I'd think with greater air pressure pushing down on the body it would naturally constrict the blood vessels, which should therefore boost blood pressure, which is why we're assuming higher barometric pressure makes us feel better. I don't know how it would affect blood volume. McBlonde - Sounds logical. Although I've heard from others that humidity exacerbates symptoms, your constant climate might be beneficial, along with the salty air. I like your theory. I think you mean Key West is lower in latitude than San Diego (closer to the equator on the globe) but all open ocean shore lines are at exactly sea level (depending on tide). And nothing sounds stupid... we have POTS

McBlonde - You're right of course, a coast is a coast, sea level is obviously the same and as you suggested, the only clear difference is the humidity. It could also be the smog or air quality differences between the two locations. Who knows, there are more possible causes of POTS symptoms than all the stars in the galaxy. I also agree that sudden barometric pressure changes affect us negatively too, in this case up or down. There's a relatively steep road I travel regularly that leads to my neighborhood that rises from 20 feet to 280 feet in less than a quarter of a mile (yes, besides the barometer I also have an altimeter on my watch). Every time I drive it, whether up or down, I feel like my head is being compressed in a vise. Chaos - A mile high. Ouch! That's gotta hurt. My wife and I drove to a new restaurant about a year ago before I knew about this reaction to altitude and after about an hour there I became too nauseous to eat. I later found out it was about 1,800 feet up. I can only imagine your altitude to be comparable to my horrible airline flight. Do you feel a substantial difference when you get close to sea level? How long does it take for the effects to materialize? I'd also be interested to know what your barometer reads on a nice day. I'm guessing around 25.00? Thanks

I cannot speak to CFS leaks or spinal injuries, but can certainly empathize when it comes to your classic POTS symptoms. Your heart rates lying down, sitting and standing mirror mine, along with the dizziness, dead head and ear troubles (do you also hear your heartbeat?) When you take your tilt table test, make certain you are supine for the full fifteen minutes before they begin to raise you. In my case (unbeknownst to me at the time) it was for only three minutes and the initial results were skewed. Depending on your type of POTS if indeed you have it, if blood pooling in your legs is also a symptom as it is in mine, you should be able to walk easier than standing in place, at least for a few minutes at a time, depending on the severity of your symptoms. In my case I can walk on the treadmill at 3mph for up to ten minutes and my heart rate will stay between 100 and 120, but the moment I stop and stand in place it will jump up 20 or 30 bpm and that's when the dizziness and headaches begin. I hope this can work for you too. Good luck.

I'm curious. Does the person with whom you will interview know you have POTS? Did you disclose that information? Were you required to?

Thank you all for your responses. McBlonde - I guess that depends on where in California you were, as you can get from sea level all the way up to 5,000 feet or more in the mountains. You could also go to Death Valley and get down to about 300 feet below sea level, which would feel great, but the heat would probably kill you in minutes. As a general rule of thumb, for every 100 feet you gain in altitude you lose about 0.10 inHg in barometric pressure, so when the weather is average (not great but not bad) and the accompanying pressure at sea level is 29.93, at 500 feet above sea level the pressure would be about 29.43. Obviously, the opposite is also true. At sea level, on a beautiful day with really high pressure, the barometer might hit as high as 30.30, whereas a hurricane could get to as low as 29.00 or lower. Remember, barometric pressure changes are due to a combination of both weather AND altitude, so that same hurricane at 2,000 feet would feel like 27.00. It's very interesting that you attribute feeling better with the saltwater in the air near the ocean. I'd never thought of that and I wonder how much salt the body can absorb from the air in that scenario. Intriguing! Carinara - Let's not confuse barometric pressure with temperature. While pressure changes have their ups and downs as discussed above, temperature also can have a detrimental effect on us, as most of us also suffer from heat intolerance. Speaking from my own experiences, I feel much better in cold than I do in heat. For me, the very best days I've had have been on cold, sunny days, and my worst have been during summer storms. Also, please keep in mind that just because it's cloudy and/or raining, doesn't necessarily mean the pressure is down. Clouds and rain (or snow) can develop from sources other than a low pressure system. For instance, a summer thunderstorm can materialize simply from warm air hitting cold air, while pressure remains high, and a heavy blanketing of snow can be caused by cold air traveling across warm water (lake-effect). On the other hand, it is also possible to be under low pressure even though it's sunny, so a check of an accurate barometer is needed.

Hi Lisa, Yes, that's the form you pointed me to last week. Thank you, and thanks for posting this for others. I found a similar one online and had my doctor fill it out right away. He had to cross some things out and fill in by hand, like, "After sitting for the maximum continuous period, does this patient need to ALTERNATE POSTURES by standing or walking about?" he added "BY LYING DOWN." I'm not sure social security will appreciate the smileys though

We all seem to agree there is a definite cause and effect to this. I've suspected it for a long time so I began tracking my symptoms along with barometer readings and found a direct correlation. I took it a step further and recorded my sleeping heart rates for exactly nine nights in a row back in February (using a Polar heart rate monitor and a SmartSync heart rate data logger) along with the barometric pressure in my bedroom before falling asleep. The results, although certainly not conclusive, did reveal an interesting pattern. Every night my heart rate bottomed out at a low of exactly 40bpm, except for two nights in a row, February 24th and 25th, when the lows were 42 and 43 respectively. Is it coincidence that on the evening of the 24th that monster 2-foot snowstorm moved into the northeast, with a pressure of 29.04 the first night and 28.62 the second, while all the other nights the pressure was above 29.50? I think not. By the way, my home is about 300 feet above sea level so 'normal' barometric pressure here is further dropped to 29.63 instead of 29.93 and I check the pressure using an accurate barometer in my room. Expanding on the medical explanation given by Erik, we've all heard that swimming is fantastic for us because of the water pressure, so I assume air pressure should have a similar effect, although not as profound. Above every human is a column of air reaching all the way up to space. This column weighs something and is physically pushing down on our bodies. When a "Low Pressure System" (a storm) moves overhead, the column of air above us literally weighs less, lessening the compression on our vessels, which causes our symptoms to become exacerbated. A high pressure system has the opposite effect, sort of like compression hose. Makes sense? I even asked my PotsDoc if he would give me a prescription to hang out for awhile in a hyperbaric chamber (used to alleviate symptoms of decompression sickness in scuba divers) to see if that helps. He refused, adding that while it might make me feel better during compression, as soon as I exit I'd probably feel worse than I did before I entered it, and I believe he's right. I'm still searching for a cave or a mine nearby that goes deep underground where pressure is much higher, so I can further test this theory. The closest I've found so far is the middle of the Lincoln tunnel, but I don't think they'd appreciate me parking there for an hour to test, and that's nowhere near deep enough. I'm looking for at least 1,000 feet below sea level to raise pressure from 29.93 to about 31.00. Anyone know of such a place in or near New Jersey, open to the public?

The good news is teenagers seem to recover from this much faster than others so don't despair. I've been on a variety of meds for about 18 months now and I think my doctor and I have made progress towards finding the right combination. My wife and I are used to the weird stares and we laugh about how strange I look when we're in public. Last week we were shopping in BJ's when I couldn't walk or stand anymore so we got to the food counter, I grabbed a few packets of salt and while squatting I poured them into my mouth and washed it down with some water. Five minutes later I was able to get up and walk to the car. People stare, the nice ones ask if I'm OK or if they can help and I thank and reassure them, but mostly my wife and I look at people's reactions so we can laugh about it later. Life happens, I try to make the best of it.

With my form of POTS, tachycardia with occasional orthostatic hypotension, I find that the lower the barometric pressure the worse I feel, plain and simple. Do you agree? I've noticed that whenever the weather gets bad, usually accompanied by an approaching low pressure system, my symptoms become exacerbated, like faster heart rates and more severe dizziness and headaches. On the other hand, when barometric pressure is high I seem to feel better, can stand longer, suffer less dizziness and headaches, and I'm even able to get some light chores done. This would explain problems with altitude too because pressure drops as altitude increases. Early on in 2008 before I was diagnosed I had a major episode during a flight from Florida to New Jersey and airline air pressure is very low, about 23.00 inHg, where normal sea level pressure is 29.93. Does any of this sound familiar?

An endocrinologist is basically a hormones or body chemicals specialist. I saw one early on before my diagnosis who examined me, couldn't figure out my symptoms and advised me to go see my GP with my problems and maybe start on anti-anxiety meds. They just didn't learn about POTS when he was in medical school. It really doesn't matter if you see an endocrinologist, electrophysiologist, internist, cardiologist, or neurologist, as long as they're knowledgeable about and experienced in POTS.

Yes, finding the right doctor is crucial, but there is a way you can have them see what goes on inside you... record it, using a video camera or preferably your cell phone so you can show whatever doctor it is right on your phone. I did this back in September of 2008, recorded my heart rate monitor watch jumping and dropping from standing and lying down, and it was instrumental in my diagnosis. I guess you can also video your blood pressure readings as at least some form of evidence, video doesn't lie. I'm fortunate that I found a good PotsDoc who understands my condition and works with me and not against me, but since I'm applying for disability insurance now I've taken the documentation a step further - I now also use a SmartSync heart rate data logger which records my heart rate wirelessly and is compatible with my chest strap, and then I print out the results in graph format. You can find the SmartSync on Amazon for $10. Good luck

I certainly do. The tachy symptom is consistent, along with dizziness and headaches, but blood pressure drops are not.

I'm on the Pyri too, 60mg, now 3 times a day. My doctor also didn't seem to care if it was the generic or not.

Neither had I before I got sick. I've always been calm and level-headed, with never any hint of anxiety. Of course that ended when I got sick and every doctor told me I was suffering from anxiety attacks, until finally being diagnosed with POTS. Are you sure it's anxiety? One of the symptoms we suffer from is tremulousness. I often feel shaky and 'nervous', but I know I'm not anxious, it's just part of who I now am.

As the others have said, with POTS every minor illness is exacerbated in us. I've also noticed my heart rate increasing when I cough but don't know exactly how much, however I have documented (using my heart rate monitor) increases from simple sneezing of 12bpm for one, 20bpm for two, and as much as 32bpm for three sneezes in a row, which makes me dizzy especially if I'm standing at the time. Coughing may have similar effects.

Thank guys. Sounds like the interviewer just collects information and has no part in the determination. I did a search for that Medical Source Statement and came up with this link: http://socialsecuritystrategy.com/?page_id=265 I copied it, eliminated some junk on the top of the form (I couldn't find the original source of the document), printed it out and just came back from my PotsDoc with it completed by him. Gotta love a doctor who'll sit down and do this with one of his patients without an appointment. Although I have copies of all of my medical records, including the diagnosis, this form seems quite necessary and I'm surprised no one from the Social Security office advised me to have my doctor complete one on my behalf. Thanks Dinet and thanks lmt.

That's normal for me too. Before my meds I'd go from a resting 60bpm lying down to 140+ standing. Now on Midodrine, Mestinon and other meds I'll hit only 120 or so standing, but my resting heart rate is now in the upper 40's on the couch and exactly 40 sleeping (after another 24-hour Holter monitor). Starting to get just a wee bit too slow. Time to adjust meds again.

With my form of POTS, orthostatic hypotension with blood pooling in lower extremities, I find that I am able to walk on a treadmill at about 2 or 3 mph for up to 10 minutes at a time and my heart rate goes up to only about 120bpm or so, as long as I keep moving. The moment I stop and stand in place it shoots up to 150bpm or more so after a walk I head straight to the couch to rest and avoid standing as much as possible. I try to exercise two or three times a day.

My doctor started me on Midodrine a couple of months ago, at 5mg, 3 times a day. I'm now up to 10mg, 3 times a day, in addition to my other meds, Mestinon, Verapamil and Desmopressin. It's comforting to hear others also get the strange side effects, like near constant chills, that crazy tingling on the back of the neck and head, hair standing up all over my body (even places where until recently I didn't know I had hair), nausea and an overall different kind of dizziness. The good news is it seems to have helped alleviate some of the POTS symptoms, specifically the headaches and, in combination with my other meds, has deceased my overall heart rate by about 20bpm. The bad news is my resting heart rate is now down to 40bpm, becoming close to dangerously too low. Time to adjust meds again.

I can't recommend a good blood pressure monitor, but can certainly help when it comes to heart rate. I use a simple Polar heart rate monitor watch with a chest strap and it's very accurate and not too uncomfortable to wear. Better yet, I just found something called a "SmartSync Universal Wireless Heart Rate Data Logger" (Model WM100), made by Oregon Scientific. It's a wireless device, compatible with Polar and many other 5.3kHz chest straps, it's about the size of a silver dollar and about an inch thick. This device not only records your heart beats for up to 30 hours at a time (up to every second), but also prints out the results as a graph. It's available online for about $50, but I found it on Amazon for only $10 and it works perfectly, although it did come with a dead CR2032 cell battery. It also comes with the PC software on mini CD and a USB cable. I use mine constantly now, to document the wildly fluctuating heart rates and I then add notes via computer corresponding with the printed time of any particular event. I've also slept with it on because I felt like my heart rate was getting too low at night from my meds, and sure enough I'm bottoming out at 40bpm. Time for another Holter monitor and medication change. Anyway, I highly recommend the SmartSync, especially if you've already got a wireless heart rate monitor. I think it's invaluable for documenting your heart rates, based on activity, and it's really cheap.

I am applying for social security disability insurance for the first time, after becoming unable to work since I first became ill in July of 2008 and being diagnosed with POTS early in 2009. I've already prepared all of my documents, have copies of all of my medical records and started the process by speaking with a representative and then completing the online forms. I have an interview scheduled with Social Security this coming Friday. My question is, does the interviewer make any decisions, or have any input toward my eligibility, or is their role only to gather information to pass on to superiors? In other words, if I come to my interview wearing my heart rate monitor watch with chest strap and show him/her how my heart rate jumps from 70bpm sitting to 120+ standing, will that help my case, or should I just save that for their doctor to whom they will inevitably send me?

It certainly doesn't sound like a seizure to me, especially if she is responding appropriately. We all seem to stare into empty space from time to time. Sometimes I stare from sheer boredom, as there aren't many physical activities I can do anymore. At other times it's from pain, discomfort, or absolute exhaustion, but that's easily identifiable just by looking at my face - my wife can easily tell the difference between the two states. The only 'state of stare' I'd caution you about is the gloom stare. I sometimes, especially when I'm alone, analyze my predicament too deeply and occasionally become depressed. Keep an eye out for that and encourage her when needed. To answer your other question, incorrect word usage is absolutely normal with us. I very often struggle to find the word I'm trying to say, regardless of how simple it is or how often I use it. Brain fog.

Happens to me too. The worst 'brain fog' problem for me is forgetting commonplace words during conversation. It took me three hours to type that last sentence

My blood pressure also doesn't always drop when I stand. As mentioned above, POTS is defined by the crazy heart rate (30+) when standing, while a consistent drop in blood pressure when standing is orthostatic hypotension. About 90% of the time when I stand, systolic (high number) will drop by about 20, while diastolic (low number) rises a few. On average I'll go from 120/70 lying down to 100/75 standing. The lowest pulse pressure readings I've yet recorded (systolic minus diastolic) were 17 and 14 (82/65 once and 97/83 another time). On the other hand, there have been times, although rare, that blood pressure remains constant even though my heart rate has increased from 60 to over 120 just from standing up.