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Emotional upset and POTS

Old Bones

Senior Member
Messages
808
Well, I started the new year off in fine form -- crying and yelling at my husband over what I considered to be an insensitive remark. He has just discovered mindful compassion meditation -- after having criticized meditation for years. The first thing he told me when I woke up was that he thinks I am trying too hard to find answers for my health problems, and that I need to learn to accept my circumstances. This is a surprising turn of mind for him. For years he's told me he admires how I'm able to stay so positive in light of a devastating collection of neuroimmune and autoimmune illnesses, and that I never give up trying to improve my situation. The timing, of course, was especially unfortunate. Considering I'd just finished the festive season mostly housebound (out of the house only to get groceries), with not a single social event, even I was surprised at how well I accepted Christmas this year for the non-event it has become.

So here's my question . . . I've been recording my heart rate/blood pressure -- lying flat before I get up in the morning, immediately after standing, and then again three minutes later. I've done this for several weeks to get baseline figures with respect to POTS. My new year's resolution is to start "pacing myself" using a heart rate monitor and timed periods of cognitive effort to see if this strategy is helpful for all of my many symptoms, including orthostatic intolerance. I realized my emotional upset this morning would have an effect on my readings, but was shocked at what happened.

My heart rate didn't go up at all from the supine to standing position -- not a single beat. Usually it increases within the first minute by 28 to 50 bpm. Any ideas why crying and yelling immediately before my heart rate measurements would make it appear I don't have POTS? Maybe I should cry and yell more often!!!
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Any ideas why crying and yelling immediately before my heart rate measurements would make it appear I don't have POTS?
Could this have activated the parasympathetic branch of the ANS? If you are sympathetic dominant and that is related to the POTS symptoms, maybe this is a possibility.
 

Gingergrrl

Senior Member
Messages
16,171
Well, I started the new year off in fine form -- crying and yelling at my husband over what I considered to be an insensitive remark. He has just discovered mindful compassion meditation -- after having criticized meditation for years. The first thing he told me when I woke up was that he thinks I am trying too hard to find answers for my health problems, and that I need to learn to accept my circumstances.

@Old Bones I cannot even begin to tell you how much I relate to this comment. Today has been okay so far and no crying or yelling as my husband's family is about to come over but this scenario plays out constantly for me. My husband has meditated for years and I am not able to do so (I do many other coping techniques but meditation does not work for me, both my mind and my ability to breathe just don't work that way and any time I've tried I end up feeling physically worse.)

He feels I also need to find acceptance and peace with my level of functioning (wheelchair bound) but this also equals doing things his way (trying supplements that he chooses, not stopping seeing doctors until we find the cure, etc) so it's is very conflicting information and feedback. I could write pages on this but just wanted you to know that you are not alone in this struggle!
 

Old Bones

Senior Member
Messages
808
Could this have activated the parasympathetic branch of the ANS? If you are sympathetic dominant and that is related to the POTS symptoms, maybe this is a possibility.

Yes, I am sympathetic dominant. I think you are on to something. I Googled “crying and parasympathetic nervous system” and here’s what I found:

“Intense emotions are associated with a sympathetic activation that can be followed by a burst of compensatory, arousal-reducing parasympathetic activity in the form of crying”.

“Cries .. . have been shown to activate the parasympathetic nervous system (PNS), that part of the autonomic nervous system (ANS) that stimulates relaxation responses to the internal organs such that breathing and heart rate slow . . . “.

“Tears don’t flow unless you have been in a state of some autonomic arousal, for whatever reason.We perhaps try to maintain the ‘stiff upper lip’ to prevent ourselves from falling into a parasympathetic state where tears are more likely after a period of tension.” I suspect almost 30 years of chronic, disabling illness would qualify as a “period of tension”!
 

Gingergrrl

Senior Member
Messages
16,171
@Old Bones Is there a list of symptoms somewhere that tells you if you are sympathetic vs. parasympathetic dominant? No doctor that I have ever seen thus far has ever even used these terms with me but I hear them a lot of PR and am curious to find out which group I am in in case this could help me.
 

Old Bones

Senior Member
Messages
808
@Old Bones My husband has meditated for years and I am not able to do so (I do many other coping techniques but meditation does not work for me, both my mind and my ability to breathe just don't work that way and any time I've tried I end up feeling physically worse.)

Like you, meditation doesn't work for me. I've tried, several times. Like any cognitive effort, it makes my symptoms worse. Focussing on my breath makes my already-irregular breathing even more irregular. If I watch my breathing as is recommended in mindfulness meditation, I end up holding my breath. And, being mindful of how my body feels (as in body scan meditation) makes me even more aware of the layer upon layer of discomfort I experience. I need distraction, not intensified awareness.

This time around, my husband is new (as in days) to meditation. After trying it himself 25 years ago, he realized it wasn't for him, criticized the practice, and supported (in fact encouraged) my decision not to meditate. That's what made his statement this morning that I should meditate so shocking, and hurtful.
 

Old Bones

Senior Member
Messages
808
@Old Bones Is there a list of symptoms somewhere that tells you if you are sympathetic vs. parasympathetic dominant?

I'm not aware of a list of symptoms, although I haven't looked. I diagnosed my sympathetic dominance by using the Rusko Test as described in a manual of strategies for living developed by an ME/CFS/FM/MCS practitioner in my city. The Rusko test, as far as I can tell from searching the internet, is most commonly used by athletes to avoid over-training. Here's how it has been described for use by patients with our illnesses.

The test takes 10 minutes, and is easier to perform if you have a heart rate monitor. First, rest in a horizontal position for eight minutes. Take and record your heart rate while lying down. Immediately move to a standing position. Take your heart rate after 15 seconds of standing, and again after two minutes. Record these numbers. (I use a blood pressure monitor because it records my heart rate for each reading, together with the time. It also provides additional information, such as the effect of standing on blood pressure.)

Your heart rate should increase with standing and then decrease to less than 50 percent of the difference between the two numbers. For example, if your horizontal HR is 60 bpm and it increases to 100 bpm soon after standing, the difference is 40 bpm. Your heart rate should recover to 80 bpm after standing for a couple of minutes.

If your HR fails to increase with standing, this may indicate failure of the sympathetic nervous system -- the fight or flight response. Apparently, this is often the case for patients diagnosed with FM.

If your HR increases by more than 28 bpm, this is diagnosed as Orthostatic Tachycardia.

If your heart rate increases but fails to recover, this is evidence of failure of the parasympathetic nervous system -- the relaxation response. This is often the case for patients diagnosed with ME/CFS, and is my experience.

Information regarding the Rusko test can be found at: http://www.ilog.ca/help/Rusko_Heart_Rate_Test.htm

I hope this helps.
 

Effi

Senior Member
Messages
1,496
Location
Europe
@Old Bones thanks for the detailed explanation of the test! I find your OP interesting, how your heart rate seemed to be normal after that emotional experience. It reminded me of a very upsetting experience I had a month or two ago, which caused a release of adrenaline that made my heart rate go up and it didn't go down until TWO entire days later. (It was about 80 BPM at rest all the time, it was awful.)

I thought I had a theory, but reading your experience made me doubt it. So I have some questions if you don't mind answering. :) You said there was yelling and crying, but was this negatively upsetting during/after, or was it more like a release of built up tension (so more like a relief somehow afterwards)?
 

Old Bones

Senior Member
Messages
808
You said there was yelling and crying, but was this negatively upsetting during/after, or was it more like a release of built up tension (so more like a relief somehow afterwards)?

I was definitely upset while I was yelling and crying, which I was doing while still lying down, waiting to do this morning's HR/BP test as described in my earlier post. And, although I had control of the outward signs of my upset while doing the test immediately afterwards (that is, I was no longer yelling or crying), I was still feeling angry and hurt -- not relieved. In fact, I wasn't aware of any built-up tension before my blow-up. Instead, it was an immediate reaction to comments that obviously hit a raw nerve. As a result of long telephone calls with a few friends and family members over the holidays, I realized how thoroughly they misunderstand my circumstances. And why shouldn't they, since I long ago learned not to discuss my health with them. My husband's comments were probably the "last straw", the realization that he hasn't truly internalized my situation either -- something I've suspected on numerous other occasions. I'll get over it, but it certainly spoiled the end of the holidays that, although dull and uneventful, had a pleasant atmosphere.
 

Gingergrrl

Senior Member
Messages
16,171
@Old Bones thank you and I've never heard of the Rusko test and will look into this although in my case the numbers will be skewed b/c I take a beta blocker and Midodrine.

Hoping the rest of your day was better. We had relatives over for new years for about 5-6 hrs who just left and another set tomorrow so holidays are not officially over yet for me!

I definitely want to respond more to this post later!
 

Mary

Moderator Resource
Messages
17,334
Location
Southern California
@Old Bones - wow - I think I would have felt like smacking him (your husband). Argghh! It sounds like something my ex-husband might have said, condescending and just totally not getting it.

But it made me wonder -- all the people who see us so sick -- there seem to be very few who acknowledge the horror of this illness -- I wonder if the majority can't bear to admit the reality of what they see, because to admit that CFS/ME is real means they could get it too. I'm not saying it's contagious, just that it is a real thing and why not them.

One of my sisters said something to me recently, and I think she may have thought she was being empathetic but it left a bad taste in my mouth, which I think I need to rinse out and let go! She underwent a procedure which left her extremely debilitated for a few weeks, severe fatigue. So she said, maybe this is what your crashing feels like, taking all your energy just to walk to the kitchen, something like that. And I agreed. Only she neglected to mention that for her it was a temporary thing of a few weeks, and not something I've endured weekly for 17 years. It still rankles some, but she's intelligent - she knows I've been dealing with this for years and years - I think it probably would have been better if she hadn't said anything at all.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
The Rusko test, as far as I can tell from searching the internet, is most commonly used by athletes to avoid over-training.
It sounds pretty much like what patients call the poor man's tilt table test. I do it with a BP monitor too.
 

Effi

Senior Member
Messages
1,496
Location
Europe
it was an immediate reaction to comments that obviously hit a raw nerve. As a result of long telephone calls with a few friends and family members over the holidays, I realized how thoroughly they misunderstand my circumstances.
I know exactly where that raw nerve is located :(

The reason I asked if it felt upsetting vs relieving is that I think there is a different chemical process going on in both cases. Upsetting would be triggering the sympathetic response (through adrenaline and the like), while a relief of built up emotions would be triggering the parasympathetic response (e.g. endorphins). But it's probably way more complicated than that!

But it made me wonder -- all the people who see us so sick -- there seem to be very few who acknowledge the horror of this illness -- I wonder if the majority can't bear to admit the reality of what they see, because to admit that CFS/ME is real means they could get it too. I'm not saying it's contagious, just that it is a real thing and why not them.
So true! They either ignore our situation, or they are hell-bent on fixing us. Cause us trying this for years and some of the brightest minds in the scientific world not being able to crack the code to this illness doesn't really impress them at all...
 

Effi

Senior Member
Messages
1,496
Location
Europe
Something I thought about re:sympathetic vs parasympathetic nervous system, in case anyone is interested. (Maybe this isn't new to anyone, but it was to me, so I'm just throwing it out there.)

I've talked about this with a practitioner who focuses on this a lot, and he had some interesting insights. He says that when a patient is e.g. sympathetic dominant, the instant reaction is to try to calm down the sympathetic nervous system. But the sympathetic and parasympathetic systems are a unit that work together. In a perfect world they'd be in perfect balance, a bit like a scale - when sympathetic is higher, parasympathetic is lower and vice versa. The reason for the sympathetic NS to be dominant is not the strength of the sympathetic NS, but the collapse of the parasympathetic NS, which causes the sympathetic to be on top all the time.

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.
 

Old Bones

Senior Member
Messages
808
@Effi and anyone else interested in the dynamics between the sympathetic and parasympathetic nervous system, here's an interesting comparison of two days of Rusko test results -- the first done yesterday morning immediately after my yelling and crying fit, the second taken this morning after a night when my heart seemed to be pounding in the 80 bpm range every time I woke up.

Yesterday supine - 65, standing fifteen seconds - 65, standing two minutes - 72 bpm
Today supine - 72, standing fifteen seconds - 109, standing two minutes - 109 bpm

Both the supine and standing measurements were/are taken with the absolute minimum amount of movement -- essentially moving my finger just enough to push the button on the BP monitor.

Immediately afterwards, I put my HR monitor watch on, and my HR shot up to 135. I then pulled a t-shirt over my head and it was up to 140. So, it is obvious crying has only a short-term positive effect on the nervous system, and a day feeling angry and hurt has a longer-term negative effect. Assuming monitoring HR is an effective way to stay within one's "energy envelope", based on these numbers it seems today will involve doing almost nothing.
 

Effi

Senior Member
Messages
1,496
Location
Europe
@Old Bones sounds like a rough day :( just a thought: could this be due to PEM from your exertion (i.e. the yelling etc)? that you are having a flare up hours after the exertion, hence the high BPM? (that doesn't answer the question why your BPM was normal right after, I'm still puzzled about that :))
 

Effi

Senior Member
Messages
1,496
Location
Europe
One more thing about the parasympathetic reflex: it can be activated by yawning at least 5 to 10 times in a row. This is an easy, free and instant way to calm down the sympathetic reflex a tiny bit. In my personal experience it's short lived, but it does give me some relief from that awful wired but tired feeling.

You can make yourself yawn, just by thinking about it, or by starting to yawn until a real yawn comes up. OR you can watch this little clip with yawning animals, and a very relaxing guitar tune. No yawning smileys on PR but I'll use this one, kind of like an awkward yawn: :eek:
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
@Old Bones sounds like a rough day :( just a thought: could this be due to PEM from your exertion (i.e. the yelling etc)? that you are having a flare up hours after the exertion, hence the high BPM?

This is what happens to me after any kind of "emotional exertion" - the next day I'll probably have PEM and the POTS will be much worse.

I seem to have the "hyperadrenergic" type of POTS, i.e., too much noradrenaline causing tachycardia, hot flashes and cold/mottled hands and feet at the same time, feeling tense, insomnia, etc. I suppose this is the sympathetic nervous system in action.

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.
 

Old Bones

Senior Member
Messages
808
One more thing about the parasympathetic reflex: it can be activated by yawning at least 5 to 10 times in a row.

@Effi I mentioned yawning and the parasympathetic reflex to my husband, and he made an interesting comment. He reminded me that in the early years with this illness, I regularly yawned repeatedly for long periods of time, even first thing in the morning when I should have been at my most rested. Now, I never yawn -- not even watching your cute video. So perhaps never yawning is a sign of sympathetic dominance.

Also in the early years, I was diagnosed with neurally mediated hypotension -- low blood pressure when standing (eg. 75/55) which made me feel like I was going to faint, although I never did. My physician checked my HR and BP at every appointment, and not once mentioned a high heart rate.

Now, I have POTS, and although my BP is sometimes low, I rarely feel like I'm going to pass out. More often these days, together with tachycardia, my BP is too high.

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