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POTS

Update 10th August 2009 Please see Daniel’s own site for the latest news on his condition.

Editor’s note: This story was originally published in the My Blood Pressure Newsletter. If you are interested in having your blood pressure story told, please email Kellie or Steve at support@my-health-software.com.

My Story – Daniel Eaton

March 15th of this year started out like any other day. I left for work before the family was up, and was looking forward to returning home to celebrate my 20th anniversary with my wife. Before lunch, however, I was admitted to the hospital (for the first time in my life), and quickly realized that things don’t always work out like we would like.

There was a pre-announced fire drill at the office. I was in my second meeting of the day when the alarm went off. I returned some stuff to my desk, stopped by the bathroom, grabbed a fresh drink from the refrigerator, and headed down the stairs. I was on the 9th floor of a 12-story building. By the time I got the the 7th floor, I started to feel weak and faint. By the time I got to the 5th floor, I was having to hold to the railing and people walking past me were asking if I was OK. By the time I got to the 3rd floor, I was having to lean on the walls to stay upright and there was no one left in the stairway except myself and two security personnel that would not leave me. When I got out the door at the first floor, they would not even allow me to go to the designated evacuation area. I sat on a curb and leaned against a street sign. I was shaking like a leaf and was numb all over. I went from being fully prepared to put in another six or eight hours at the office to having to get assistance to get into the car and heading right to the hospital…all in the matter of about 10 minutes.

I thought that I would be back to work after a couple of shots or pills. Instead, I have been to see around 25 different medical professionals and have had just about every test that anyone can think to run on me. These include everything from MRI’s to spinal taps and doing lab tests on over 30 vials of blood. Right now, the doctors want to get me into the Mayo Clinic for two full days of study by the experts there in their Autonomic lab. Because everything else has been ruled out, the doctors believe I had a sudden onset of an autonomic nervous system disorder called POTS.

POTS is an acronym for Postural Orthostatic Tachycardia Syndrome. To quote from the official POTS web site at http://www.potsplace.com/pots_an_overview.htm, “Standing up is something most of us take for granted; we’ve been doing it since childhood. Our bodies automatically adjust to the pull of gravity by increasing vascular tone, heart rate and cardiac output. Blood vessels contract, heart rates increase and our systolic blood pressure remains the same or decreases slightly while diastolic pressure (the bottom number) increases slightly. Our bodies operate in perfect homeostasis and we stand up with little effort.” At least they should. Mine doesn’t.

In layman’s terms, a person with POTS suffers from an abnormal increase in their heart rate when they stand up. A person is said to have orthostatic intolerance when their body does not properly adjust to a standing position. For person with POTS though, standing is the least of their problems. My heart beats faster, so what?

To continue with a quote from the Pots Place web site, “It is the autonomic nervous system (ANS) that regulates the needed adjustments in vascular tone, heart rate and blood pressure upon standing. The ANS is also responsible for regulating a multitude of other organs and functions throughout the body. Some of these functions include temperature, pupil dilation and constriction, salivation and the digestive tract. A patient experiencing ANS dysregulation may experience abnormalities in the many organs and functions the ANS regulates.” I can add sweat and tears to that list as well. I have problems with all these things going from one extreme to another. One night, I had such an increase in secretions from my eyes and ears that I woke with my face covered in gunk from my eyes and found that my left ear drum had ruptured while I slept.

The “official” POTS web site goes on to say that “POTS patients use about three times more energy to stand than a healthy person. It is as if these patients are running in place all the time.” My arms and legs often ache, burn, and/or go numb because to too much or too little blood flow. I frequently wake up with my arms or legs numb and with numbness from the bridge of my nose to the tip of my chin. Without activity, there is no consistent blood flow. Yet any activity is very tiring. When I stand (or sit for very long), the blood starts pooling in my legs and my heart starts hurting from overwork and too little oxygen. When I lay down, I get a blinding headache as the blood rushes to my head. I spend most of my time reclined back in a position half-way between the two. All this also makes it difficult to concentrate and causes memory issues.

There is no easy cure for POTS. Depending on my position, I might have low blood pressure or high blood pressure. The doctors can give me medicine to make the BP go down or make it go up, but no pill can take the place of the body’s ability to regulate up or down as needed. The frequent increase in adrenaline in my system, the brain’s way of increasing my heart rate when my BP drops, causes me to often get less than three or four hours of sleep a night. The insomnia and overwhelming fatigue/weakness are the things that are the worst for me.

At my last visit, my neurologist asked me to get a blood pressure cuff and start taking regular readings so that I could have some history as well as averages to give to the specialists at the Mayo Clinic. Since I am a computer and gadget kind of person, I immediately looked for some software to help track this. After looking at several options, I fell in love with My Blood Pressure.

I just took my BP readings from a ten-day period and exported them for some calculations in Excel. The bottom line is that when I stand, my Systolic pressure immediately drops by an average of 12 points, my heart rate goes up by an average 39 beats a minute, and my pulse pressure drops by 25%. My heart rate has increased as much as 59 beats per minute when I stand and has been “clocked” as high as 153 beats per minute and as low as 74. During this ten-day period, my BP was charted as high as 140/92 and as low as 82/69. I have had a 45-minute tilt table test that showed that the longer I am up, the greater these changes become.

POTS/blood pressure chart
Click here to view full size

The difference between the systolic and diastolic blood pressure is called your pulse pressure. It is this difference that someone “feels” when taking your pulse. Because my systolic pressure drops when I stand, my pulse pressure drops by 30-50%. This is caused by a decrease in blood volume for people with my condition as well as blood pooling and not circulating. Because of my very high pulse rate, low pulse pressure, and poor circulation, it is very common for me to not be able to get an accurate reading when I stand. My BP machine just errors out

Because it is so important to note the position that I am in for these readings, I use the Note field in My Blood Pressure for every entry. By using “standing” or “sitting” in every note, I can filter my results and get the kind of information that the doctor needs. He doesn’t want to take the time to analyze all the raw data when I go in for an appointment. He does, however, have time to read a paragraph like the preceding one. Because of the power of being able to filter and average based on words in the notes field, I have requested that the developer add this as an option to be able to do this directly in the My Blood Pressure program. This could be used for not only positional recordings, but everything from current symptoms to diet to medication. (Editor’s note: Thanks to Daniel’s suggestion, this has been added to v2.1)

I will wrap this up with a short, funny story that shows what life is like with POTS. One recent evening, my daughter wanted something that I had. Instead of tossing it to her, I acted like I was throwing it at her as a joke. No big deal, right? Wrong! When I did, it felt like someone poured boiling water down my arm. My body did not compensate for this increase in “gravity” or g-force when I went through the throwing motion. The pain of all the blood rushing to the end of my arm and hand was so intense that I immediately put my hand into the air to get the blood to drain…right into the ceiling fan. Some days I just can’t win. :-)

Daniel Eaton, Atlanta, GA. Daniel can be contacted at..

Update

A couple of days ago, Daniel wrote:

Vanderbuilt University’s Center For Space Physiology And Medicine http://www.mc.vanderbilt.edu/gcrc/space/ has an Autonomic Dysfunction Center http://www.mc.vanderbilt.edu/gcrc/space/#ADC . They study why astronauts come down with the same problems that I am having after extended stays in space and the causes and treatments for those of us that have never been to space, yet end up with the same problems with gravity. After reviewing all my medical records, and seeing that my systoms appear to be getting worse, they have asked me to participate in four different studies as a research patient. I told them I was very interested and will be at Vanderbilt University for inpatient testing from 11/28 through 12/10. This condition has had me down for 7 months now, so I am very excited about this possibility. Best news I have had in a long time….

Update 10th August 2009 Please see Daniel’s own site for the latest news on his condition.

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2 Responses to “Blood Pressure Story – POTS”

  1. Jennifer says:

    Hi! Just wanted to let you know I am definitely in the same boat as you! What exactly does the research include at Vanderbilt? Is it going to cost you anything? Just wanted to see if i could pick your brain for more info since there might still be a chance for me to get involved–Thank you!

    • Steve says:

      Hi Jennifer,

      I don’t think that Daniel will see your comment here. Why don’t you email your question to him. His email address can be found three paragraphs up from the bottom of the article.

      Best wishes for your health and I hope you get better soon!

      Steve
      My Health Software support

bottom KellieMyHS

About Kellie

Kellie is 37 years old and together with her brother Steve makes up the My Health Software team.

She helps on the websites and gathering news for the programs. Kellie worked in the medical industry prior to having her two children (8 and 6) and has a strong interest in self awareness and management of health conditions.


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