Emotional upset and POTS

[Old Bones]

I have found a low dose beta blocker (atenolol) to make a huge improvement to all those symptoms. I take 1/4 of a 25 mg tablet when I wake up, and another 1/4 tablet when I am going to do something "strenuous" like take a shower or do some cleaning. This study talks about hyperadrenergic POTS.

@jimells My physician and I have discussed beta blockers on a few occasions, but so far we've deferred a decision to later. My main concern is that beta blockers can make symptoms worse, if the reason for the high HR is low blood volume. Blood volume testing isn't available in my area, so there's no way to tell if this is my situation. I'll take a look at your hyperadrenergic POTS study -- thanks!

 

[Effi]

So perhaps never yawning is a sign of sympathetic dominance.

I was pondering about that possibility too! It sounds like it could be true, doesn't it?

So, perhaps my orthostatic problems have changed over the course of many years -- starting with parasympathetic dominance, and later sympathetic dominance.

I was reading a little bit about sympathetic vs parasympathetic in the case of auto immune illness and how it progresses and changes over time, depending on what the illness mechanism is at the moment. I definitely feel like this illness isn't static at all, so I wouldn't be surprised if some patients switch between dominances.

 

[jimells]

My main concern is that beta blockers can make symptoms worse, if the reason for the high HR is low blood volume.

Yes, dosing does seem to be tricky. I am constantly amazed at how sensitive I am to tiny doses of these medications. I expect that most doctors would insist that such small doses couldn't possibly have any clinical effect. But if I take 1/2 tablet at a time, my supine pulse (normally 50) is driven down to 50 or lower, which is too low for me, as I get cold, etc.

It's a very fine line between tamping down the adreno receptors and avoiding hypotension. I know that cortisol is always a popular topic on these forums, but for myself I think the adreno receptors play a more important role in causing crashes and exacerbation of symptoms.

Speaking of blood volume, you may find this article interesting:

Renin-Aldosterone Paradox and Perturbed Blood Volume Regulation Underlying Postural Tachycardia Syndrome

Background
[snip]
We prospectively tested the hypothesis that patients with POTS are hypovolemic compared with healthy controls and explored the role of plasma renin activity and aldosterone in the regulation of plasma volume.
[snip]

Conclusions— Patients with POTS have paradoxically unchanged plasma renin activity and low aldosterone given their marked reduction in plasma volume. These patients also have a significant red blood cell volume deficit, which is regulated by the renal hormone erythropoietin. These abnormalities suggest that the kidney may play a key role in the pathophysiology of POTS.

Results
[snip]
Patients with POTS had a significantly higher upright plasma norepinephrine than did the control subjects... In contrast to norepinephrine values, plasma epinephrine values were not different between the 2 groups in either the supine or the upright positions

Discussion
This study sought to assess both blood volume and the role of the renin-angiotensin-aldosterone system in the regulation of blood volume in POTS. The main findings from this prospective study were that compared with control subjects, patients with POTS

(1) have a significant deficit of plasma volume,
(2) have a significantly lower level of serum aldosterone,
(3) have an inappropriately low level of plasma renin activity given the degree of hypovolemia that they exhibit, and (4) have a significant deficit of red blood cell volume in the setting of an elevated standing heart rate and plasma norepinephrine.

 

[Gingergrrl]

Am still confused how you know if you are sympathetic or parasympathetic dominant (unless you had a good autonomic doctor test you which thus far I have not.) If you have POTS and low BP does that point in one direction or another or could it still go either way?

I read the study and am so confused if it applies to me. Based on my arterial blood gas test, I still wonder if I have too many RBC's or the ratio is off (versus too few) and based on my reaction to IV saline, I am unclear if I actually do have low blood volume although there is a good chance that I do.

I am on a low dose beta blocker and without it my HR goes into the 160's and 170's day & night but I do really wonder now if the BB is making my BP, breathing, and MCAS worse. I have yet to have a doc offer me a viable alternative. I tried a CCB one time and it dropped my BP to the point that I threw up and almost fainted and the doc told me never to take it again and put me back on the BB.

 

[jimells]

Am still confused how you know if you are sympathetic or parasympathetic dominant

I'm certainly no expert on the POTS research literature, but I've never seen this concept in any of the papers I've read.

I am unclear if I actually do have low blood volume although there is a good chance that I do.

The Raj et al study cited above has some interesting comments on blood volume:

The plasma volume of 1 patient with POTS actually exceeded expectations. Conversely, 3 patients with POTS had a plasma volume deficit of >20%, with a plasma volume deficit as high as 27% in 1 patient with POTS.

I'm quite sure I have low blood volume. I've been to the Emergency Room three times recently to get saline IV, and all three times I felt better after the treatment. I tried to make arrangements to have saline IV at home on a regular basis, but the primary care doc won't hear of it. She wouldn't even give me a reason.

 

[Gingergrrl]

I'm certainly no expert on the POTS research literature, but I've never seen this concept in any of the papers I've read.

Thanks @jimells and I keep hearing about sympathetic vs. parasympathetic dominance (in dysautonomia) but cannot quite figure out what this means in practical terms.

I'm quite sure I have low blood volume. I've been to the Emergency Room three times recently to get saline IV, and all three times I felt better after the treatment. I tried to make arrangements to have saline IV at home on a regular basis, but the primary care doc won't hear of it. She wouldn't even give me a reason.

I assumed I had low blood volume (and still assume this) but wish I knew for sure. I did well with first IV saline but did badly with second and third gave me pulmonary edema. I've been proposed a few different reasons why this occurred (although most docs were baffled) and I do wonder if if could possibly mean that I do not have low blood volume but don't think I will ever know.

I wondered if figuring out the parasympathetic vs. sympathetic could help me to figure it out?

 

[Effi]

I keep hearing about sympathetic vs. parasympathetic dominance (in dysautonomia) but cannot quite figure out what this means in practical terms.

hi @Gingergrrl Sympathetic and parasympathetic are two parts of an automated reflex of the nervous system. The sympathetic is what is switched on when you're very actively doing things (think concentration, competition, fight/flight). The parasympathetic is what is switched on when you are in relaxed mode (think about anything that physically relaxes you, incl. sleeping).

This is an automatic response, but in ME, FM and other auto immune illnesses this reflex usually doesn't work well, due to the underlying illness process. There shouldn't be a dominance, they should be working in perfect balance - when one is switched on, the other is switched off and can recuperate. In case of a dominance, one is always switched on, which prevents the other from ever being on.

I think one way of predicting which dominance you have (this is not a scientific test, that's why I say predicting ) is to see which state you are usually in. Are you usually in a 'wired but tired' state, feel exhausted but can't easily fall sleep, never take a nap, never really yawn? This would point towards sympathetic dominance. Or do you feel drowsy, do you feel like you could sleep all day, do you yawn a lot during the day? This would point towards parasympathetic dominance.

 

[Gingergrrl]

hi @Gingergrrl Sympathetic and parasympathetic are two parts of an automated reflex of the nervous system. The sympathetic is what is switched on when you're very actively doing things (think concentration, competition, fight/flight). The parasympathetic is what is switched on when you are in relaxed mode (think about anything that physically relaxes you, incl. sleeping).

@Effi thank you and that makes sense.

This is an automatic response, but in ME, FM and other auto immune illnesses this reflex usually doesn't work well, due to the underlying illness process. There shouldn't be a dominance, they should be working in perfect balance - when one is switched on, the other is switched off and can recuperate. In case of a dominance, one is always switched on, which prevents the other from ever being on.

So the two systems should be in perfect balance but with dysautonomia one becomes dominant? Is this a simplistic (but correct?) way to view it?

I think one way of predicting which dominance you have (this is not a scientific test, that's why I say predicting ) is to see which state you are usually in. Are you usually in a 'wired but tired' state, feel exhausted but can't easily fall sleep, never take a nap, never really yawn? This would point towards sympathetic dominance. Or do you feel drowsy, do you feel like you could sleep all day, do you yawn a lot during the day? This would point towards parasympathetic dominance.

I am actually neither so am not sure what this means! I do not feel "wired but tired" and do not really feel fatigue. I can usually sleep normally at night and feel rested but in cases where I don't sleep, I can easily take a nap the next day. I am able to yawn but do not yawn excessively.

What is completely out of whack is my heart rate, blood pressure, and my ability to breathe while standing/walking is virtually gone. Without a beta blocker my HR goes to the 160's or 170's day & night and without Midodrine my BP is about 80/50. Without Midodrine, I cannot even walk a few steps. I have other autonomic issue like poor temperature control, no sweating, etc, and also a mast cell disorder. But the inability to breathe while standing is my absolute #1 problem now. Does this relate in any way to sympathetic or parasympathetic issues?

 

[Sushi]

So the two systems should be in perfect balance but with dysautonomia one becomes dominant? Is this a simplistic (but correct?) way to view it?

The two branches control different functions. You can check which ones on Wiki probably. But with Dysautonomia, sometimes the wrong branch will try to control a function that should be controlled by the other. Theoretically, they should sort of pass the ball to each other as you do different things during the day and night. But they can end up competing and (in my case) were both overactive when tested.

 

[Old Bones]

What is completely out of whack is my heart rate, blood pressure, and my ability to breathe while standing/walking is virtually gone. . . . But the inability to breathe while standing is my absolute #1 problem now. Does this relate in any way to sympathetic or parasympathetic issues?

@Gingergrrl It took a lot of searching to find information regarding breathing and the parasympathetic/sympathetic nervous system that hasn't already been covered in this thread -- at least not the posts I've read. I know you are very proactive in searching for answers, so perhaps the following isn't new to you. The information is taken from an article called "Function of the Vagus Nerve" on the website: www.drsircus.com.

“Human Beings have an Autonomic Nervous System (ANS) that is actually comprised of three separate subsystems, the Parasympathetic Nervous System (PNS), the Sympathetic Nervous System (SNS) and the Enteric Nervous System (ENS). The enteric nervous system has been described as a ‘second brain’, which communicates with the central nervous system (CNS) through the parasympathetic (e.g., via the vagus nerve) and sympathetic nervous systems.”

“It is our vagus nerve that provides the gateway between the two parts of the autonomic systems. The vagus acts as a bio-informational data bus that routes impulses going in two directions. Since the vagus nerve acts as the central switchboard it should come as no surprise that impaired functioning of this one nerve can lead to so many different conditions and problems.”

“The vagus nerve uses the neurotransmitter acetylcholine. If our brain cannot communicate with our diaphragm via the release of acetylcholine from the vagus nerve then you will stop breathing.”

“The vagus nerve is used to regulate the heartbeat and the muscle movement necessary to keep you breathing.”

I've included only what I consider to be the most relevant segments from a lengthy article on the website mentioned above. I am minimally aware of discussions in the ME community regarding the vagus nerve. I believe you have mentioned not being sure of your diagnosis since your symptoms don’t seem to “fit” a particular illness. But, based on the above, perhaps the vagus nerve is a contributing factor for you.

 

[Gingergrrl]

@Gingergrrl It took a lot of searching to find information regarding breathing and the parasympathetic/sympathetic nervous system that hasn't already been covered in this thread -- at least not the posts I've read. I know you are very proactive in searching for answers, so perhaps the following isn't new to you. The information is taken from an article called "Function of the Vagus Nerve" on the website: www.drsircus.com.

@Old Bones Thank you so much for researching this and even though I am pro-active, I am often going in circles and find things but lack the background to really interpret them. I plan to look at all of the links you posted and I actually look at every link you guys give me and view this as a full-time job (without any pay LOL.) I really appreciate it. I am sure the Vagus nerve is involved but don't know how to fix it.

“Human Beings have an Autonomic Nervous System (ANS) that is actually comprised of three separate subsystems, the Parasympathetic Nervous System (PNS), the Sympathetic Nervous System (SNS) and the Enteric Nervous System (ENS). The enteric nervous system has been described as a ‘second brain’, which communicates with the central nervous system (CNS) through the parasympathetic (e.g., via the vagus nerve) and sympathetic nervous systems.”

I had never heard of the ENS before, only the other two branches (SNS and PNS.)

“The vagus nerve uses the neurotransmitter acetylcholine. If our brain cannot communicate with our diaphragm via the release of acetylcholine from the vagus nerve then you will stop breathing.”

“The vagus nerve is used to regulate the heartbeat and the muscle movement necessary to keep you breathing.”

This quote is very striking to me b/c I have a very low tolerance for meds that affect acetylcholine- both cholinergics and anti-cholinergics (Ex: Benadryl and Mestinon.) I have also been told that I have a potential diaphragm problem that is causing me a restrictive lung disease (except for an extra-pulmonary cause b/c the inside of my lungs are normal.)

Does it explain how Ach and the diaphragm are connected or what someone can do to fix it? What's strange is that when I research muscle diseases that affect the diaphragm, they all state that breathing would be worse when someone is lying flat/supine but I am the opposite and lying flat, my breathing is totally normal. This is what is so confusing for me since breathing is disappearing when I stand, it seems autonomic vs. muscular/diaphragm.

I've included only what I consider to be the most relevant segments from a lengthy article on the website mentioned above. I am minimally aware of discussions in the ME community regarding the vagus nerve. I believe you have mentioned not being sure of your diagnosis since your symptoms don’t seem to “fit” a particular illness. But, based on the above, perhaps the vagus nerve is a contributing factor for you.

Yes, I remain very confused re: my diagnosis and it's not that I need a label, I just need a way to fix it or lead to the right treatment path so I can breathe, stand and walk again. Am trying to gather all the info I can before I see a true autonomic specialist in Feb. Thank you again!

 

[Wayne]

So according to this practitioner, the only way to stop the sympathetic NS from being dominant is to fix the parasympathetic response. The only way to do this is to regularly go into very deep relaxation. This is extremely difficult when you have a sympathetic dominance. I'm working on it, and it has given some results but it's a very long and slow (and frustrating) process. ...... I'd be interested to hear some thoughts from others who have tried to do this.

Thanks All for the interesting discussion. @Effi, I've been working at this for years, without reallying realizing how I've been pragmatically trying to move over into the parasympathetic mode. One thing that has worked well for me has been to take daily morning coffee enemas.

Mornings are usually the most difficult times for me, a time I now think I'm most sympathetic dominant. I used to think I felt immensely better after doing CEs because I was reducing toxicity in my body. That likely plays a part, but I've now come to believe I feel better primarily because CEs stimulate the vagus nerve, which helps me move over into parasympathteic mode. I also do various energetic and polarity exercises during my CEs which help as well.
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More recently (this past week), I've begun experimenting with holding my breath. My initial objective was to increase CO2 levels in my body, to see if it would improve some of my functioning, especially brain and cognitive functioning. Just a few days ago, I ran across THIS ARTICLE on breath holding, which supposedly can help a transition to the parasympathetic. Just starting, but am noticing some subtle but interesting shifts. Below is a snippet from the article:

What can you gain from breath holds?

As described above, the benefits of performing breath holds are numerous and can deeply affect your life. We have experienced from courses and VIP cruises that performing breath holds and breathing exercises provides our participants with more energy, calmness, resilience to stress, mental stability, a greater focus on priorities and goals, a closer connection to the body and more attention to the moment.

On the long run meditation and breath holds seem to develop your nervous system and brain. Scientific studies have revealed that people who practice meditation and/or freediving show marked changes in their brain and nervous system. One area in the nervous system that undergo changes lies in the brain stem and is connected to the vagus nerve. This is part of the calming parasympathetic pathway which counteracts stress.

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Below is the picture of an exercise I sometimes do during the few times I'm out and about. It helps keep me grounded, and I think it's most likely because it keeps my sympathetic nervous system from overreacting to various stimuli.

I notice it's especially helpful when I'm forced to sit under fluorescent lighting. I shared it with my Chiropractor a few days ago, and he noticed an immediate shift from doing it. In case it's not clear, it's touching the thumb against the middle finger on each hand, and then interlocking them.

@Old Bones, thanks for starting this thread; it's been an interesting discussion. Sorry to hear how it all came about with your crying and yelling, etc. To briefly mention, I've noticed most of us human beings seem to be generously endowed with a certain number of "blind spots". Unfortunately, it often seems men have more than their fair share!

 

[halcyon]

“The vagus nerve uses the neurotransmitter acetylcholine. If our brain cannot communicate with our diaphragm via the release of acetylcholine from the vagus nerve then you will stop breathing.”

I don't believe this is accurate. The actual motor function of the diaphragm muscle is controlled via the PNS/phrenic nerve. There is sensory information carried on the vagus nerve that helps determine respiratory rate but I believe that's the extent of the involvement of the vagus nerve in breathing.

 

[Gingergrrl]

I don't believe this is accurate. The actual motor function of the diaphragm muscle is controlled via the PNS/phrenic nerve. There is sensory information carried on the vagus nerve that helps determine respiratory rate but I believe that's the extent of the involvement of the vagus nerve in breathing.

@halcyon I honestly do not know the answer but I guess this would be for another thread so I don't derail this one? I would love to get more information re: the diaphragm and breathing since this is a key issue for me right now. I wish I had been a biology major at moments like this!

 

[Effi]

My initial objective was to increase CO2 levels in my body, to see if it would improve some of my functioning, especially brain and cognitive functioning.

@Wayne could you expand on this a little? I always thought that our poor functioning was in part the result of too little oxygen in our blood (due to not being able to take up enough oxygen) but now I'm confused...

 

[Gijs]

I also have the breathing and diaphragm problem since i have POTS/ME. I Always wonder if it compensation (bloodflow problems to the brain) or that it is a main symptom and problem of this disease. Very difficult. I think it is a ANS/PNS problem due to a shift which never returns to a normal function anymore. The system is broken i think.

 

[Wayne]

could you expand on this a little?

Hi @Effi, I'd be happy to...

It appears higher CO2 levels has the paradoxical effect of increasing oxygen utilization in the body. Last month I ran across a reference to the "Bohr Effect". I did a quick search on PR for it, and came across a brief conversation between Hip and Alex on it. So I sent them a PM, and we had a discussion about it. Below is my first post in that conversation.

I'd be happy to try to answer any questions you may have.. A question I have is whether increased CO2 levels relates to the main points of this thread--whether the increased oxygenation in the cells that results from raised CO2 levels would help transition the body over to parasympathetic.

➤ Carbon dioxide also facilitates the release of oxygen from hemoglobin, and the absorption of oxygen into the tissues (this is known as the Bohr effect). Lack of CO2 in the blood means less tissue oxygenation, and increased CO2 means more tissue oxygenation.

Hi Alex & Hip,

I just ran across an interesting reference to the Bohr effect, and did a quick search on PR on it. I noticed you two discussed it briefly, and thought you would find this little snippet of interest.

Besides alkalizing tissue and stopping tumour invasion, oral sodium bicarbonate has another beneficial effect. This is an increased concentration of carbon dioxide in blood and tissues, and is called the Bohr effect. It allows more oxygen to be released from haemoglobin into tissues, and especially into cancer cells. This would also be important when treating cachexia, fatigue and muscle pain.

So, apparently sodium bicarbonate can increase CO2 levels, something I would assume Cheney would highly approve of. I've been upping my oral intake of sodium ascorbate recently (which contains about 10% sodium bicarbonate), and In the past couple of days, added an extra element to this.

I tweaked my lower back, and started applying a mixture of dmso, coconut oil, and sodium ascorbate. It's helping my back, but a much more noticeable effect has been an increase in energy and sense of well being. I've been assuming it was primarily due to the DMSO, but I decided to do some research on sodium bicarbonate, and came up with this ARTICLE which contained the above snippet.

I thought the entire article was quite interesting, but the snippet on sodium bicarbonate raising CO2 levels really caught my interest. I now think there's a possibility the SB might be playing a bigger role than I had suspected on my increased energy. I'm thinking getting it transdermally could be a factor as well.

Anyway, thought I'd pass this along in case you might also find it interesting.

Best, Wayne​

 

[Hip]

So, apparently sodium bicarbonate can increase CO2 levels

I am doubtful that sodium bicarbonate (or an alkalizing diet) can increase CO2 levels. Here is something I posted elsewhere, explaining why:

Some years ago, I heard a programme on the radio about someone with ME/CFS who improved from an alkalizing diet (took about a year though).

I tried alkalizing, but I found alkalizing always made me feel lightheaded and mentally, made me feel sort of flimsy and lightweight, so I always discontinued after a few days. (This lightheadedness/lightweightness was the same whether I alkalized via diet or bicarbonate).


As I was theorizing about possible mechanisms, I thought initially that an alkalizing diet might work by increasing blood CO2, which in turn would increase tissue oxygenation.

This thought occurred to me because we know the body tries to keep blood pH relatively constant, and CO2 is one of the factors that affects blood pH (because CO2 when dissolved in water become carbonic acid, so CO2 act to acidify the blood).

So I presumed that as you start consuming bicarbonate, which acts to alkalize, the body will raise CO2 levels in the blood to compensate, in order to prevent the blood from becoming too alkaline.

However, as far as I could determine, it turns out that this is not the case:

if you see this article, it says:

When CO2 builds up, a central receptor increases ventilation even if pH receptor is sensing high pH.

In other words, according to that article, normalizing blood CO2 levels seems to have priority over normalizing blood pH, and the body will expel excessive CO2 (through increased breathing), even if doing so leads to further blood alkalization.

Thus my guess is that sodium bicarbonate (or an alkalizing diet) does not increase blood CO2 levels.

 

[Wayne]

I tried alkalizing, but I found alkalizing always made me feel lightheaded and mentally, made me feel sort of flimsy and lightweight, so I always discontinued after a few days. --- In other words, normalizing blood CO2 levels seems to have priority over normalizing blood pH, and the body will expel excessive CO2 (through increased breathing), even if doing so leads to further blood alkalization.

Hi @Hip, thanks for chiming in. To mention briefly, I had some testing done many years ago by a naturopathic physician, and the testing revealed my body was overly alkaline (so much for all those assertions that acidity is prevalent in most chronic illnesses).

I was given a handout on all the symptoms that arise from being too alkaline, and was pretty shocked to discover how closely they resembled the symptoms of ME/CFS. We have a water filter with options for different levels of alkalinity, and I've learned (as has my wife) that alkaline water doesn't work for us.

When you think about it, we need a high level of acidity in the stomach to digest food, and HCL tends to decrease as we age (apparently magnesium chloride can help the body make hydrochloric acid). Alkaline water in the stomach would probably tend to dilute the HCL.​

 

[Effi]

thanks @Wayne ! please keep us posted