POTS (Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia) is a particularly vile condition, especially when it is very severe. Mine is about as severe as it gets. I have ups and downs, good days and bad days. Bear in mind that a POTS good day is worse than a healthy person’s worst bad day, physically. It is inexplicable. There is no way you can grasp this if you have not lived through it, or lived with someone who has it. It is impossible to truly wrap your mind around what it means to live with this condition. Most of the time, you can’t see anything wrong; not unless you have a skilled eye and a lot of familiarity with the subtleties. You can’t know the pain, the difficulty breathing, the nausea, that sometimes it actually feels like dying. You may think I am being dramatic. But I am not. I promise. Have a look at what the experts have to say…they compare the quality of life in severe POTS patients to that of those in congestive heart failure and chronic obstructive pulmonary disease. Let’s hear it from them:
The symptoms of POTS are life altering and debilitating at times. POTS patients use about three times more energy to stand than a healthy person (Grubb, 2002). It is as if these patients are running in place all the time. Activities such as housework, bathing, and even meals can exacerbate symptoms (Grubb, Kanjwal & Kosinski, 2006). Research shows that POTS patients’ quality of life is similar to those with congestive heart failure and chronic obstructive pulmonary disease (Benrud-Larson, Dewar, Sandroni, Rummans, Haythornthwaite & Low, 2002) Twenty-five percent of people with POTS are disabled and unable to work (Goldstein, Robertson, Esler, Straus, & Eisenhofer, 2002). Most patients will have to make some lifestyle adjustments to cope with this disorder.
-source: www.dinet.org
The impact of POTS can be significant, approaching a quality of life equivalent to patients with chronic obstructive pulmonary disease or congestive heart failure. The symptoms people experience are: a racing heart with postural changes, extreme fatigue, light-headedness, headache, an inability to tolerate even moderate activities, and cognitive difficulties. If your physician has a strong suggestion regarding POTS by a particular way they measure your blood pressure at an office visit the next step is a referral to a cardiologist who will order standardized methods to assess the orthostatic changes. These involve tilt table testing and may also include an electrocardiogram, a device called Holter monitoring that keeps a record of your heart rate over 24 hours, and plasma norepinephrine levels obtained from both supine and standing positions.
There are no FDA approved medications to help with the dysautonomia of FMS. As mentioned above, the best approach is exercise. Other lifestyle modifications such as adequate fluid intake to avoid dehydration, compression stockings and pacing to avoid fatigue remain the best alternatives.
-source: Dysautonomia in fibromyalgia – just what is that funny feeling I have?
A ‘GOOD’ DAY IN THE LIFE OF A POTSIE
(*PP=Pulse Pressure, which is Systolic minus Diastolic*)
I stood for about one minute: BP 95/71 – HR 164 – PP 24
I then lay down for one minute: BP 99/58 – HR 79 – PP 41
As you can see, upon standing for only a minute, my heart rate more than doubled, and my *pulse pressure* dropped almost 50% (40 is a normal pulse pressure). Had I remained standing, my pulse pressure would have kept dropping into the single digits.
When I lay down, within one minute, my heart rate returned to closer to typical, and my pulse pressure returned to normal. My blood pressure is low in both readings, which has always been typical for me. I do have hypertensive BP spikes, particularly diastolic.
My hyperPOTS looks less severe from a BP hypertension standpoint than most because of how low my ‘normal’ BP has always been. I also have Neurally Mediated Hypotension (also known as Neurocardiogenic Syncope), which complicates things. My particular brand of hyperPOTS is the MCAD/MCAS variety. It is usually preceded by some degree of flushing, often very extreme flushing. It can look like this:
But it seldom ends there. POTS often comes with several unpleasant comorbid conditions. It’s a difficult path. Not everyone with Dysautonomia has as severe symptoms as I do, so if you are newly diagnosed and reading this, please don’t take anything you read here as a prophecy of doom for your own future. There are several complex mitigating factors involved in my situation that are very unusual.
I also recommend, both for the patient as well as their family and friends, reading the article Dysautonomia Information For Loved Ones. It contains a comprehensive symptoms list as well as an excellent section on stress and anxiety.
More About Pulse Pressure…
The full series of my posts on this topic can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there. I also admin a private research & support group on Facebook. If you are interested in participating AND have BOTH Dysautonomia AND variable pulse pressure (drops and/or spikes) request to join here:
http://www.facebook.com/groups/POTSPulsePressure/
About Pulse Pressure…
The full series of my posts on this topic can be found here: posts about pulse pressure. I hope this series is helpful to at least a few people out there. The bare basics that apply to all posts on this topic:
When my PP spikes high, my heart rate usually is within a normal range. Regardless of heart rate, a high PP will cause my heart to feel like it is pounding very hard, with great force (not to be confused with speed). The harder it beats, the higher my PP has spiked. When it is super high, say over 60, I can feel it sort of reverberating throughout my body. It is very uncomfortable, and I often experience great discomfort in the chest during these episodes. It often happens supine.
HIGH or WIDE PULSE PRESSURE = LOWER DIASTOLIC = POUNDING HEARTBEAT
Alternately, I am usually standing (sometimes sitting) when my PP drops. The lower it drops, the weaker my heartbeat feels. A super low PP is accompanied by pre-syncope and I have extreme difficulty detecting my own heartbeat. It becomes thready, faint, and seems irregular.
LOW or NARROW PULSE PRESSURE = HIGH DIASTOLIC = SOFT HEARTBEAT
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Filed under: Autonomic Function, Dysautonomia, MCAD, NMH/NCS/VVS, POTS, Research, Strategies For Coping Tagged: awareness, blood pooling, blood pressure, bp, Bradycardia, chronic illness, Chronic obstructive pulmonary disease, dysautonomia, Fatigue, flushing, fluttering, Food and Drug Administration, heart, Heart failure, heart rate, histamines, Holter monitor, hyper POTS, hyperadrenergic POTS, Hypertension, hypotension, information, invisible illness, MCAD, NCS, NCS/NMH, Neurological Disorders, NMH, pooling, Postural Orthostatic Tachycardia Syndrome, POTS, prognosis, pulse, pulse narrowing, pulse pressure, quality of life, rants, rash, redness, Research, symptoms, syncope, tachycardia, Tilt table test, VASOVAGAL, vertigo
