Pots Without "symptoms"

[EarthMother]

In a recent thread about an article on teens with disabling POTS the writers noted it was a disease that often is time limited and that these young people "outgrow" POTS as young adults. I wondered after reading the article, if we actually have any good longitudinal data on teens with POTS who recover and if there is the possiblity (probability) that POTS come back again in their 30's, 40's etc.?

In my own case, I recall having notes in my medical chart in my early 20's like "tachycardia on mild physical exersion." And was on verapamil for years before my first child. However, I was fully functional back then. And though I had crashes up and down for the next coupe of decades ... I tended to 'recover' to a lessor degree each time but had periods of some degree of 'normalacy' inbetween. Until this last breakdown two years ago.

So interesting question ... did many of us have undiagnosed POTS as young people and furthermore what speculation do we have on the impact this may have on our current situation.

In my own case, I honestly don't know if anything I did or didn't do back then would have changed the course for me. I was given Florinef 15 years ago, even before an official POTS diagnosis (they called it idiopathic hypotension as early as 1992). Nothing seemed to work for very long ... and things seem to wax and wane on their own unpredictable timeline.

So who knows? Now this brings me to another interesting question/observation ... what if you have POTS by definition (your heart rate goes up 30+ when you stand up) but you are completely asymptomatic? That is to say, you don't have syncope, you seem to have no negative effects from the anomoly but yet technically you have POTS? We know from that one poorly designed research study with all the healthy army recruits that you can sample thousands of healthy young adults and find a sample population who meet the head-up tilt criteria for POTS. Do these people really have what we know of as POTS? Will they likely have an onset of the life limiting POTS down the line?

Interesting questions. I wonder about this for many reasons, but in particular because at least two of my children meet the technical criteria for POTS. Both are very healthy and strong young people with excellent endurance. My youngest does tend to gray out when getting up quickly, but doesn't seem to have any other red flags. Neither are interested in pursuing a diagnosis, because they don't have any negative effects from the way their bodies are compensating. Not now. Who knows what happens down the line? All we can each do is speculate.

Hopefully in our hindsight and collective attention ... our insights can lead to answers and better treatment options down the line.

[firewatcher]

I think estrogen has a big role in POTS. The levels are still fluctuating in the teens and don't get "normalized" for regular ovulation until the early twenties. At that point we induce the trauma of childbirth, and the body changes in countless and irreversible ways. Once we hit our thirties, fertility declines and the hormones start fluctuating again, but our bodies were used to "normal" levels of estrogen so we feel the difference. It could be that some of us are simply "predisposed" for an autoimmune or endocrine response that triggers POTS symptoms and onset of disability. We also "rule our own schedules" before children, so stress and sleep deprivation take their toll on our bodies as well. Once the adrenals are primed or exhausted by stress, we are again changed.

The joys of womanhood!

[ramakentesh]

Im not sure estrogen applies in my case - Im a guy with too much testoestrone - but the female/male ratio is telling.

In my experience I wasnt probably quite 'right' since about the age of 14 when I noticed that reading made me feel dizzy for reasons I cannot fathom and I started feeling very tired all the time. That being said it was only minor and I had a normal life and never got dizzy from walking or anything. It improved as I got older.

In 1999 this developed further for a few months and I got quite dizzy and spacy for a while but I put it down to lack of sleep etc. It was VERY mild.

In 2000 I had my BP measured and it was 160/90 - and i was standing at the time. I was told to get it checked back at home (i was on holkidays) - and when i did I had it done sitting down and it was normal so it was never followed up.

In 2003 my symptoms went from zero to 100 overnight.

THis indicated to me that I had testable POTS back as far as 2000 to some degree, but I wasnt symptomatic until 2003.

[carinara]

So interesting question ... did many of us have undiagnosed POTS as young people and furthermore what speculation do we have on the impact this may have on our current situation.

i also wonder if this is was happened to me. When i was a child / teenager i felt dizzy and tachy a lot. I remember not being able to stand long. Another thing is, that my doctor prescribed me my first BB at the age of 14 and it made me feel even sicker. Well, nobody took me serious anyway. Then this period was followed up by many years were i felt quiet normal and ok. Then 2 years after i had my child (i was 27 then), my body acted up big time POTS wise. Ever since back then it waxes and wanes. I was finally diagnosed with POTS at the age of 36.

carinara

[firewatcher]

Im not sure estrogen applies in my case - Im a guy with too much testoestrone - but the female/male ratio is telling.

In my experience I wasnt probably quite 'right' since about the age of 14 when I noticed that reading made me feel dizzy for reasons I cannot fathom and I started feeling very tired all the time. That being said it was only minor and I had a normal life and never got dizzy from walking or anything. It improved as I got older.

In 1999 this developed further for a few months and I got quite dizzy and spacy for a while but I put it down to lack of sleep etc. It was VERY mild.

In 2000 I had my BP measured and it was 160/90 - and i was standing at the time. I was told to get it checked back at home (i was on holkidays) - and when i did I had it done sitting down and it was normal so it was never followed up.

In 2003 my symptoms went from zero to 100 overnight.

THis indicated to me that I had testable POTS back as far as 2000 to some degree, but I wasnt symptomatic until 2003.

No, I think it is more an autoimmune trigger for your case, and some of "ours" as well. There IS a real, biological, chemical difference in the female brain (as I am sure you can attest to ) that probably makes women more likely to have POTS. I KNOW without a doubt that I have had POTS for as long as I can remember, mine was not a puberty onset case. I have not ever been able to run because of my HR response, and in middle school I complained of frequent dizziness. I think you can have the predisposition, and need a "trigger" or you can develop some condition that creates dysautonomia very quickly.

[dsdmom]

I have always greyed out first thing in the morning - as long as I can remember actually. But I have never had any other symptoms and was always extremely active in sports, etc. No problems with tachy. Fast forward 30 years and add a ton of physical and emotional trauma in a couple short months and voila! - dysautonomia. I do wonder about my greying out when I first stood up in the morning but I always assumed that everyone had it!

[Csmith3]

I have had POTS symptoms since childhood. It was different when I was younger in that I would crash, then recover for a while. Now it is constant, but probably not as bad as the crashes I had between the ages of 15 and 25.

I was never aware of the fast heart rate until I developed a heart arrhythmia in my 20s. Which makes me wonder whether I actually had POTS before that or it was just a combination of VVS and low BP. The only thing I do recall was that my resting heart rate was very high, so there must have been some sort of IST.

There are many signs of dysautonomia in one side of my family and two people besides me have had POTS/orthostatic hypotension and the symptoms with it (one male, one female). However, my Dad would meet the POTS diagnosis but doesn't have the symptoms and never has had. He has incredible exercise endurance. I suppose the only notable things are that his resting heart rate has always been very low (though goes higher than mine on standing), whereas those with symptoms have tended to have a higher resting rate. I don't know the other family members well enough to know if they would meet the criteria for POTS, but I do know they aren't symptomatic.

After 25 years of this, I am pretty confident my POTS is not going. I don't believe I could have changed the present outcome. I have two doubts over cause/prognosis. One relates to Michele's recent thread and a neck injury I sustained about one year before my symptoms really kicked in. But even before that injury, I was a fainter and had very poor standing tolerance so it would only account for part of the story. The other is hormonal; I wonder if I will be much better after the menopause, and temporarily worse before it. Time will tell!

Cath

[summer]

From what I read, the criteria for POTS includes the symptoms of dizziness, fatigue, pre-syncope etc. Having a heart rate increase of 30 bpm on standing alone is not POTS. So I would not consider that people with high standing heart rates and no other symptoms have "undiagnosed POTS" or meet the criteria for a POTS diagnosis. A syndrome is a recognized group of symptoms, and in the case of POTS they include all these other symptoms in addition to the hr increase (fatigue, dizziness, presyncope, mental clouding...).

POTS is defined (Table 1) as the presence of symptoms of orthostatic intolerance for at least 6 months accompanied by a heart rate increase of at least 30 beats/min within 5-30 minutes of assuming an upright posture. This should occur in the absence of orthostatic hypotension (a fall in blood pressure >20/10 mmHg). The syndrome must occur in the absence of prolonged bed rest, medications that impair autonomic regulation (such as vasodilators, diuretics, antidepressants or anxiolytic agents), or any other chronic debilitating disorders that might cause tachycardia (such as dehydration, anemia or hyperthyroidism). It is important to recognize that this syndrome is typically disabling. Hence, the mere observation of orthostatic tachycardia is not, by itself, sufficient to make the diagnosis of POTS.

-Dr. Satish Raj

It would make me wonder, however, if those people have the potential to develop POTS.

I believe I had POTS in my teens and early twenties. I was able to go to school, and function to a certain degree, but I experienced a lot of fatigue, dizziness, and occassional syncope. I certainly could not keep up with my friends - and went to bed most days after school.

When I was a student nurse, my nursing instructors insisted I make an appointment with my doctor because I would often have to leave when we were observing proceedures (standing), and more then once went to the floor in the OR, while wearing a surgical mask. They thought I was pale and thin, and that I should be assessed.

When I went for my appointment, the doctor laughed about the whole thing and that my instructors had sent me when I was obviously perfectly healthy. I think that appointment lasted about 30 seconds. Unlike others here, when I became pregnant for the first time, I felt great, and that improvement lasted a number of years, although I was always easily tired and dizzy at times.

Twenty years later, I had a huge crash after a viral infection. A year later, I was diagnosed with POTS. My specialist asked about my history and said I probably always had mild POTS - it's not mild anymore. This made sense to me. I also would like to see some data about the long term course for teens with POTS. Maybe the diagnosis has not been recognized long enough yet.

[ramakentesh]

Summer your experience echos mine to some degree. However I was able to play sport but I always took longer to recover than other people. And I was ALWAYS tired as a teen/college student. And then something changed and all of a sudden POTS went from an unknown tiredness to a life changing nasty.

[corina]

interesting topic em!

looking back at my life (45 by now) i have always had "bad times" where i had arythmia's, dizziness, extreme fatigue (considering my age), low bp (which was considered very good!) etc. in between i had better times, 2 children and a fantastic life.

after having had surgery in 2001 (broken tail bone while skating in 2000)under general aeneasthetics, i crashed really hard and got worse along the years. was finally diagnosed in 2003 (if i remember well). over the years i had noticed that general aenaestetics made me much worse, where epidurals didn't give me any problems at all. i have never come back to where i once was (healthwise) and am trying to make the best of my life right now.

i am trying to find out where my dysautonomia comes from (family ?) but have to get my own life back on the right track first now!

interesting to read other peoples stories, thanks for bringing this up!

take care,

corina