Excessive Heart Rate Response to Orthostatic Stress in POTS is Not Caused by Anxiety

[Otis]

Got the study here.

There's a link to the full PDF from there, but here's a direct link just in case.

Abstract:
Postural tachycardia syndrome (POTS) is characterized by excessive increases in heart rate (HR) without hypotension during orthostasis. The relationship between the tachycardia and anxiety is uncertain. Therefore, we tested whether the HR response to orthostatic stress in POTS is primarily related to psychological factors. POTS patients (n = 14) and healthy controls (n = 10) underwent graded venous pooling with lower body negative pressure (LBNP) to -40 mmHg while wearing deflated antishock trousers. "Sham" venous pooling was performed by 1) trouser inflation to 5 mmHg during LBNP and 2) vacuum pump activation without LBNP. HR responses to mental stress were also measured in both groups, and a questionnaire was used to measure psychological parameters. During LBNP, HR in POTS patients increased 39 5 beats/min vs. 19 3 beats/min in control subjects at -40 mmHg (P < 0.01). LBNP with trouser inflation markedly blunted the HR responses in the patients (9 2 beats/min) and controls (2 1 beats/min), and there was no HR increase during vacuum application without LBNP in either group. HR responses during mental stress were not different in the patients and controls (18 2 vs. 19 1 beats/min; P > 0.6). Anxiety, somatic vigilance, and catastrophic cognitions were significantly higher in the patients (P < 0.05), but they were not related to the HR responses during LBNP or mental stress (P > 0.1). These results suggest that the HR response to orthostatic stress in POTS patients is not caused by anxiety but that it is a physiological response that maintains arterial pressure during venous pooling.

 

[Otis]

This probably isn't news to those of us with POTS, but I'm glad they did the study.

Now, I'm trying not to make wisecracks about trouser inflation but it's very hard not to.

 

[Mya Symons]

This may be off subject. I just went to the store today with my son after I woke up. The minute I stood up, and started moving around, I could feel my heart pounding and I felt like I couldn't breath. It was a horrible trip. Sometimes it is also hard to stand in the shower. Is this what is considered POTS and how come it seems to come and go? I work 4 days a week and find when I do not sleep more than 6 or 7 hours, I don't have these symptoms. I sleep a lot Friday through Monday. I am wondering why. If POTS is physiological, is associated with sleep somehow? Is it the longer you lay flat, the harder it is to stand up and get the blood flowing correctly? I am also wondering if this is why I need to sleep with my arms above my head or I can't feel them in the morning and sometimes my hands and feet have areas that look blue or black in color.

 

[Sunshine]

Hi Mya and Otis. Otis thanks for posting the research. Mya, I have tried to answer a few of your questions and quoted you so you can see what I am talking about. I hope they help a little bit.

This may be off subject. I just went to the store today with my son after I woke up. The minute I stood up, and started moving around, I could feel my heart pounding and I felt like I couldn't breathe.

If the blood is pooling out of your brain/heart and into your feet then you will feel like this. Your heart pounds because it is increasing circulation to your brain to try and stop you from fainting, because you stood up and your body did not adjust correctly to being upright. People who do not get as pounding heart and tachycardia, tend to faint. POTS is a compensatory measure and fainting is not common in POTS, feeling faint though (pre syncope) is very common. The tachycardia part and chest pain is because the heart is doing a 'work out' just getting you to remain standing upright instead of blacking out. If you have CFS on top, then POTS would usually put you in a wheelchair because in CFS the heart is weaker due to mitochondrial dysfunction that affects muscles. (Heart is a muscle). In sautonomia you can get postural tachycardia with normal blood pressure, high blood pressure or low blood pressure. What is important to note is either the high postural (standing up) blood pressure stops a faint, or the tachycardia stops a faint! Either way, it's horrible for the person as you sadly know.

Sometimes it is also hard to stand in the shower.

Hot water causes your blood vessels to dilate, meaning even more blood is going away from your brain and heart and to your skin to cool you down and to regulate your core temperature if this didn't happen (along with sweating) you'd risk hyperthermia and coma. Everyone with dysautonomia (POTS is a form of dysautonomia) will feel weakened in the shower/bath or especially in hot summer weather including finding it harder to breathe. Conversely, many people with FMS (Fibromyalgia) report feeling better in hot weather and less fatigued. These people do not have POTS or CFS. Hot weather/temperature weakens muscles which is why elderly people become ill in the summer heat. Severe CFS folk are much weaker than elderly people. Interestingly, as we age out autonomic nervous system becomes impaired in terms of optimal functioning. Elderly people (as young people with POTS) report feeling faint/dizzy after a large meal and may even fall asleep or even feel clammy/ill. This is due to excessive blood pooling in the stomach and less blood going to the brain, creating symptoms.

Is this what is considered POTS and how come it seems to come and go?

POTS is a chronic condition, it doesn't come and go but the severity of symptoms (like CFS symptoms) do. What you're describing is called OI, or Orthostatic Intolerance which is a feature of dysautonomia and/or those with a low blood volume (low blood volume has been found in CFS research). Many people with CFS have POTS (around 25%) and Orthostatic Intolerance (which you describe) is universal in CFS, around 90%.

I work 4 days a week and find when I do not sleep more than 6 or 7 hours, I don't have these symptoms

POTS occurs irrespective of how much sleep you get, but people will feel worse with less sleep due to increased fatigue and pressures on the sympathetic nervous system that will increase tachycardia and the 'wired' feeling people get from lack of sleep. Of note, people with POTS meet the criteria for CFS, but do not have the hallmark immune supressive symptoms of sore throat and extreme exercise intolerance causing episodic paralysis and or major relapse from minor exertion. POTS people can often work and perform tasks to some degree, and they are not beseiged by immune symptoms and pain, that people with CFS are. Dysautonomia happens in other conditions also such as Parkinson's disease and Diabetes.

If POTS is physiological, is associated with sleep somehow? Is it the longer you lay flat, the harder it is to stand up and get the blood flowing correctly?

POTS is a biological CNS disorder, and demonstrated by dysfunction of the autonominc nervous system that requires a TILT test to diagnose it correctly. Your question on laying flat for long periods is linked to a 'sluggish' CNS response to standing. Certainly the longer one lays flat, the more BP drop/rise and more dizzy/faint one will feel if one suddenly stands up. This would be demonstrated well by people who have POTS and develop a virus. For the severely affected within a few days of being in bed with a virus, it can take them up to a week to be able to walk again just to the bathroom.

Immobility causes atrophy of the muscles, especially in the calf muscles that hold blood when you walk. The 'fitter' someone is with POTS, the less they are affected by it, in terms of being mobile. Having CFS + POTS is a total disaster, as the physical restrictions CFS places upon people, worsenes the POTS condition. I wish you well Mya. POTS is a complex condition for any doctor to understand, you can ask questions from people with POTS at www.potsplace.com on their forum, and also check out this ladies videos on youtube who is pretty high functioning but good at explaining things.

http://www.youtube.com/user/chronicallykyli

She's got her own forum now as well for POTS
http://www.thedysautonomiaconnection.com/

 

[Sunshine]

Otis, can you give us a short introduction on what you would recommend for treatment or what the causes are for POTS?

Hi Diesel thought I'd help you out a bit too if that's OK?. The causes of POTS are not known, it usually comes on in young people and females, just like CFS. Some people seem to grow out of it, whatever that means. If they are 'cured' though is another matter. POTS seems to come on after an infection, with CFS (XMRV?) pregnancy or a head injury, basically something that involves tampering with the nervous system.

Treatment is very limited and there are only a few specialists in the world because in general, patients are not diagnosed using a TILT table test, and/or called hysterical (again, just like CFS):


Easy tips
*Total stress avoidance - stress worsens chest pain/tachycardia and weakens the immune system.
*Avoid alcohol - alcohol lowers blood pressure and alters blood circulation to the peripheries.
*Avoid people who are infected with colds/coughs. Viruses always make POTS worse, just like CFS.
*Get up from bed/chair/floor slowly to reduce sudden lack of blood to the brain.
*Vigorous exercise worsens POTS symptoms, yet gentle activity such as walking (although difficult due to OI) keeps legs muscles more conditioned.

More advanced tips
*Increase fluid intake and salt - increases blood pressure and helps to reduce faintness in some people.
*Avoid hot environment - heat causes dilation of blood vessels, worsens weakness/faintness.
*Try vascular stockings on legs to try and trap more blood when standing up. This can enable some people to walk again and get upright and out the house or mobilise around the home.
*Try low dose beta blockers - good for tachycardia and anxiety. Too high dose worsens breathing problems, and increases sleepyness and exhaustion.
*Try drugs to increase fluid retention (Florinef etc) - as above.
*Try unlicensed drugs that affect the central nervous system that work on leg blood vessel contraction (Midodrine). NB: Also used in Parkinson's disease patients who have orthostatic faints. Often dramatic results with this drug, but has significant side effects. Mainly supine (laying flat) hypertension. When you take Midodrine, you can't lay down afterwards! So it can't be used in people who are bed bound.

 

[toddm1960]

Check out DINET.ORG great information on all forms of dysautonomia.

 

[Otis]

Otis, can you give us a short introduction on what you would recommend for treatment or what the causes are for POTS?

Diesel,

Sunshine has done a much better job than I could have possibly done - thanks Sunshine and toddm1960 for the info. DINET.ORG will send a free DVD with basic POTS info, all you have to do is ask!

My formal POTS Dx is only a couple of weeks old. I finally noticed it was a problem a few months ago but suspect it's been an increasing issue for the last few years. I also have serious temperature regulation problems and heat just wipes me out. I first got CFS in '80 but rebounded to 90% for about 10 years and then have slid down to my current level of functioning (3 as measured here on PR) at an ever-increasing rate with dysatonomia jumping into the game in about '08, although I suspect digestive problems dateing back to the 80s was possibly an early clue.

 

[ahimsa]

Easy tips
* Total stress avoidance - stress worsens chest pain/tachycardia and weakens the immune system.
* Avoid alcohol - alcohol lowers blood pressure and alters blood circulation to the peripheries.
* Avoid people who are infected with colds/coughs. Viruses always make POTS worse, just like CFS.
* Get up from bed/chair/floor slowly to reduce sudden lack of blood to the brain.
* Vigorous exercise worsens POTS symptoms, yet gentle activity such as walking (although difficult due to OI) keeps legs muscles more conditioned.

More advanced tips
* Increase fluid intake and salt - increases blood pressure and helps to reduce faintness in some people.
* Avoid hot environment - heat causes dilation of blood vessels, worsens weakness/faintness.
* Try vascular stockings on legs to try and trap more blood when standing up. This can enable some people to walk again and get upright and out the house or mobilise around the home.
* Try low dose beta blockers - good for tachycardia and anxiety. Too high dose worsens breathing problems, and increases sleepyness and exhaustion.
* Try drugs to increase fluid retention (Florinef etc) - as above.
* Try unlicensed drugs that affect the central nervous system that work on leg blood vessel contraction (Midodrine). ...

Great set of tips, Sunshine! I like how you included walking. I am careful to listen to my body and not overdo it. However, on a good day, when I am feeling a bit better, it generally helps me to have a short walk (NO STANDING - either keep walking or sit down to rest) to get the blood flowing.

I have one question about your last tip. What does "unlicensed drug" mean? I take the prescription drug midodrine (brand name ProAmatine). I'm just not sure what it means when you list midodrine as an unlicensed drug - is that another term for "off-label" drug usage? (using a drug that has been approved for one condition for a different condition)

Anyway, here are a few comments of my own after living with Orthostatic Intolerance (OI) for twenty years. First, I'm no expert on this at all but the following description of OI, POTS and NMH match what I first learned back in the mid 1990s ( the text below is from http://www.cfids.org/about-cfids/orthostatic-intolerance.asp):

Diagnosis: Orthostatic Intolerance (OI)
Orthostatic intolerance (OI) is the development of a set of characteristic symptoms while standing or sitting upright. It has been associated with chronic fatigue syndrome (CFS) in both adults and children.

The connection between OI and CFS was first introduced in 1995 by Rowe and associates at Johns Hopkins University, who identified a type of OI called neurally mediated hypotension (NMH) in CFS patients. Since 1995, scientists have learned much more about the broader problem of OI in CFS. It is now thought that many CFS patients (up to 97% in some studies) have some form of OI and it seems to be a particular problem in young people and at least with CFS.

Types of OI
There are many types of OI, at least two forms have been linked with CFS in research studies: NMH and postural orthostatic tachycardia syndrome (POTS).

NMH is a precipitous drop (at least 20-25 mm Hg) in systolic blood pressure when standing. The blood pressure drop is accompanied or preceded by an increase in symptoms.

POTS is a rapid increase in heart rate (pulse) of more than 30 beats per minute (bpm) from baseline, or to more than 120 bpm total, during the first 10 minutes of standing. It is also known as chronic orthostatic intolerance, or COI.

Other links with OI information - http://www.ndrf.org/orthostat.htm and http://www.nymc.edu/fhp/centers/syncope/orthostatic_intolerance.htm

I fainted on the tilt table (two different tests - fainted at 20 minutes on the 1995 test, after about 30 minutes on the 2003 one) and was told that I have NMH but not POTS. My heart rate increased somewhat but not by enough to get the POTS lable. Lately, my standing heart rate first thing in the morning, before my first dose of midodrine, has ranged from 130 to 150. I was checking my blood pressure and the blood pressure monitor also measures heart rate. So I accidentally discovered this heart rate increase. So, maybe now I have POTS, too? Even if I do I'm not sure it matters much. After all, I'm already treating my OI symptoms the best way I know how. :Retro wink:

I'll finish with a few more tips to add to Sunshine's great list.

* Rest after meals. Food in the stomach means blood is diverted from extremeties and can make OI worse. I always plan any activities around having an an empty stomach.

* Get a chair for the shower to minimize standing. We have a shower stall with a built-in seat and grab bar. It also helps me when I take relatively cool showers (at least make the final rinse cool).

* Rest with your feet elevated - in a recliner, on an ottoman, or even sitting cross-legged. I have found that lying in the recliner is better for me than completely lying flat (which I would not do during the day anyway now that I am taking midodrine).

This is a bit of a tangent from the original post but I wanted to add some comments based on my experience. I hope they were helpful!

 

[Mya Symons]

Thank you very much for your replies and explanations. These symptoms seem to be worse some days and better others and I am trying to figure out what the pattern is. I think they are worse on the 4 day weekends because I sleep the whole time and I usually don't walk around at all except to go to the bathroom. Your explanations explain why I do not feel better in the summer. It aslo explains why I find it harder to breathe in the summer even though I do not have seasonal allergies. My doctor keeps on telling me I should feel better and I keep on telling her I don't. Sometimes I do have chest pains when I stand up or sit up and my heart starts beating fast. My chest feels a little squeezed and I feel like I have a lump in my throat. At first I thought it was acid reflux or GERD, but I take a huge amount of acid reflux medicine. I think it might be the problems with circulation. Pretty scary. Maybe someday I will find a doctor who "thinks out of the box" and is more willing to believe me and to try new medicines.


Anyway, didn't mean to go on again. Thank you very much again for being patient and explaining things to me.

 

[guest]

Thanks a lot for the answer, sunshine!

 

[taniaaust1]

sorry sunshine.. but i disagree with your post in places as one who has both CFS/ME (canadian consensus definition CFS) as well as POTS

POTS is a compensatory measure and fainting is not common in POTS, feeling faint though (pre syncope) is very common.

I go completely unconcious with POTS for up to 3-5 mins (according to a friend who was with me one time that i did faint completely.. most of my faints thou, ive been alone). I'm known quite a few who have gone completely unconscious due to POTS (im talking about those who have both CFS and POTS). Is there a study done of how many with of those with both CFS/ME and POTS do pass out completely? I'd love to see one as I think more in this group completely fainting may be more common then some realise.

Everyone with dysautonomia (POTS is a form of dysautonomia) will feel weakened in the shower/bath or especially in hot summer weather including finding it harder to breathe.

POTS has never affected my breathing.. I can go right to complete pass out without it affecting my breathing. (just wanted to say that so people know it doesnt necessarily affect ones breathing. I havent heard many actually say that POTS affects breathing.

POTS is a chronic condition, it doesn't come and go but the severity of symptoms (like CFS symptoms) do. What you're describing is called OI, or Orthostatic Intolerance which is a feature of dysautonomia and/or those with a low blood volume (low blood volume has been found in CFS research). Many people with CFS have POTS (around 25%) and Orthostatic Intolerance (which you describe) is universal in CFS, around 90%.

My POTS does come and go (im going by my heart rate when i say that and what POTS is according to its defination) .. if my CFS/ME is in a worst state.. my POTS tends to be worst too. It is the CFS/ME which has given me the POTS. Please tell me where the study is which says that 25% with CFS/ME have POTS? I was under the impression that the rate of POTS was higher then that if it was the canadian consensus CFS defination of CFS.

Of note, people with POTS meet the criteria for CFS, but do not have the hallmark immune supressive symptoms of sore throat and extreme exercise intolerance causing episodic paralysis and or major relapse from minor exertion

Well said... I myself have noticed that there are some who only probably have POTS who have been falsely diagnosed with CFS. More need to be aware of the symptoms POTS causes and the ones it doesnt. Sad that some have false diagnoses as POTS can be treated easier than CFS/ME

 

[Otis]

Awareness of POTS (let alone the spectrum of dysautonomia symptoms) appears to be very low in the medical field. My GP didn't think anyone wanted to touch POTS "with a 10 foot pole", but my cardiologist made a tentative Dx of POTS, scheduled me to wear a holter monitor to make sure I don't have arrhythmia, and had a basic understanding of dysautonomia and its overlap with CFS. I did get the deconditioning speech, however. Hopefully I can get a tilt table test.

I haven't studied the literature extensivly but it seems that POTS has only been studied in the last 5-10 years so getting an accurate differential with is problematic when combined with the dearth of docs able to Dx a Fukuda, let alone a CCC, case of ME/CFS. We fall through so many cracks in the medical system it's ridiculous.

taniaaust1, thanks for sharing your experiences with both POTS and fainting. Do you have a Dx of OI as well as POTS? The fainting sure sounds like OI, but I don't have those symptoms and am not an expert. The distinction seems to be in what our BP dies when we stand. We sure win the "these symptoms really suck" lottery with this stuff, eh?

 

[ahimsa]

I go completely unconcious with POTS for up to 3-5 mins (according to a friend who was with me one time that i did faint completely.. most of my faints thou, i've been alone). I'm known quite a few who have gone completely unconscious due to POTS (i'm talking about those who have both CFS and POTS). Is there a study done of how many with of those with both CFS/ME and POTS do pass out completely? I'd love to see one as I think more in this group completely fainting may be more common then some realise.

taniaaust1, maybe you have more then one type of OI (Orthostatic Intolerance)? It's a complicated condition but I believe it is possible to have both NMH (Neurally Mediated Hypotension) and POTS.

Like Sunshine I also don't remember seeing that POTS is related to fainting because it is defined as increased heart rate without a drop in blood pressure. I thought that only NMH was related to fainting. And the studies that I have read (some years ago, not lately, so could be bad memory) showed that many ME/CFS patients with NMH do not faint until they are tested by the tilt table test. To use my own situation as an example, I fainted twice on two separate tilt table tests (1995, 2003) but I have never fainted "in real life" either before I got sick (20 years ago) or afterwards.

NMH (Neurally Mediated Hypotension) is a steep drop in blood pressure after standing for a while (and it is a delayed drop, not the same as the drop which happens after you first stand up). This is different from POTS, an increase in heart rate. Both of these problems can be seen on a tilt table test but they are not the same thing. Also, I think that both of these problems may be related to the finding that many ME/CFS patients have low blood volume.

There are studies linking ME/CFS to various forms of Orthostatic Intolerance. I'm not sure which keyword to use in searching for research studies. I think the Johns Hopkins doctors in 1995 were among the first to find a connection between ME/CFS patients and NMH (it was called vasodepressor syncope back at the very beginning).

This article - http://emedicine.medscape.com/article/902155-overview - may be a good starting point for finding research studies. A few quotes from this article:

Orthostatic intolerance is a confusing topic. Some of the confusion originates from recent appreciation of the condition's clinical variants, some originates from the emerging understanding of its diverse underlying pathophysiologies, and some originates from its nomenclature, which seems to change at least every year.

Standing successfully requires interplay of blood volume, physical, neurologic, humoral, and vascular factors which compensate for the effects of gravity on venous pooling. Under ordinary conditions, acute humoral alterations have little to do with the initial response to standing upright but may play an important role during chronic orthostatic intolerance or relatively late during upright standing. Also, changes in such factors may affect resting or tonic responses and thus may influence overall vascular regulation through background effects.

Orthostatic intolerance is not always due to autonomic or other compensatory dysfunction and can be due to inadequate responses of compensatory mechanisms to environmental stressors. For example, someone who is dehydrated may be unable to stand up without dire consequences, but no dysautonomia is noted; instead, the autonomic and other compensatory systems cannot adequately compensate for the loss of circulating blood volume.

 

[tymewarp#9]

Thanks Everyone, for all this info; maybe helps explain why I call ME/CFS/FM the "damned if you do, damned if you don't" disorders, regarding exercise. Physical activity can simultaneously help some of my symptoms, while making other symptoms worse :Retro mad:.
Maybe this also hints as to why there are sometimes big arguments about exercise (as it relates to ME/CFS).