Chronic Bounding Pulse

[sb4]

So a little update on what's happening with me.
I don't have ME. I have post viral POTS and chronic bounding pulse. It's just this community was the closest I could find where I could interact with people with similar symptoms.
Recently however I discovered a post on reddit that lead me to join a discord called bounding pulse where other people are experiencing this exact symptom, which is my worst symptom of all.
I have since made a subreddit called Chronic Bounding Pulse where I post about it.

I have made a post briefly describing what it is and a video showing it. Basically it is your heart beating very forcefully (not fast) 24/7.

Anyway, around last September I declined massively again. My pulse was bounding HARD 24/7, I developed heart fluttering, and swollen achy feeling left jugular. I was in a lot of discomfort 24/7, even when trying to sleep, so much so I could no longer enjoy anything and I thought about death a lot. I got a little better in January after restarting vitamin c but was still struggling hard.

In November I tried Clonidine which significantly helped my symptoms, indicating that the problem was, in part, due to a chronically activated sympathetic system. However I grew tolerant to it within 10 days and when I tapered off I hit a new low where my symptoms where jacked up to the point I couldn't even eat. This lasted for about 2 weeks so it was rebound.

In late April I persuaded my GP to give me Carvedilol. I haven't had success with beta blockers in the past however they where in low dose and carvedilol also acts on a1 like clonidine. This carvedilol noticeably reduced my heart pounding however it came it a cost of light headedness and insomnia. Still it was worth it and I continue taking it. It also points a finger again at the sympathetic nervous system. Is the system just out of whack or is it compensating for something?
I would love to get a stellate ganglion block to test this.

2 weeks ago I decided to try b12 injections despite trying b12 in various forms in the past without success (sublinguals, oils, hydroxy/methyl, etc). Day 1 I felt noticeably worse making me want to discard the rest of the vials however by day 4/5 I noticed I felt better. Now 2 weeks in my heart pounding is significantly reduced and other symptoms like my "fried nervous system" feeling have vanished. Around 2 months ago I was severe / very-severe, now I would say I'm moderate / severe.

My b12 had been high on a blood test 13 years ago when I was doing sublingual however I still was suffering from these symptoms despite that. My last B12 test was 7 years ago which showed lowish levels 270 (170-770).

I think the underlying cause of my symptoms is causing my lazy stomach (slow motility, low stomach acid) which is impairing my b12 absorption along with possibly increased b12 requirements from chronic stress. So the b12 injections are like applying a plaster to a wound.

I have ordered another OAT test so I'm waiting on the results of that. I plan on experimenting with other b vits / injections / revisiting high b1 protocols. I plan on getting a stellate ganglion block this winter (though they are very expensive).

I just hope this recent improvement with B12 sticks. Dare I dream that I might even build on it? This last winter was really rough for me and I only just feel like I'm remerging from survival mode.

 

[southwestforests]

Right now, this morning, since I'm wiped out from yesterday, the most intellectual response I'm having is, Hmmm, interesting ...

And that comes from a place of my pulse doing odd things for years, sometimes odd enough to go visit the ER, A&E for y'all across the pond from here, and of wondering whether I might be wise to get tested for POTS.

 

[bad1080]

congratulations on being one step closer to finding out what's wrong with you and on the improvement!

It also points a finger again at the sympathetic nervous system. Is the system just out of whack or is it compensating for something?

even if you may not be suffering from me-cfs i recommend reading this: https://chronicillnesstraumastudies.com/mecfs-freeze/ (and part 2 as well)
she goes into some detail about how and why the parasympathetic system is so dysregulated and why it feels like the two (para- and sympathetic) are fighting each other. looking back at my early life it makes a lot of sense to me (even if the "Polyvagal Theory" did not substantiate) but that's something everyone has to judge for themselves.

 

[sb4]

congratulations on being one step closer to finding out what's wrong with you and on the improvement!


even if you may not be suffering from me-cfs i recommend reading this: https://chronicillnesstraumastudies.com/mecfs-freeze/ (and part 2 as well)
she goes into some detail about how and why the parasympathetic system is so dysregulated and why it feels like the two (para- and sympathetic) are fighting each other. looking back at my early life it makes a lot of sense to me (even if the "Polyvagal Theory" did not substantiate) but that's something everyone has to judge for themselves.

Yeah I've come across this theory before and have a few times that sort of confirm it. Social situations where positive interactions resulted in a temporary but significant improvement in symptoms.
It's not common, most positive social interactions produce a small improvement but they have to be positive. I've had 2 times where I had a significant boost though.
Seems to have to involve strangers bizzarly. I think maybe the ventral nerves work overtime in the face when being positive to new people.

I can see it both ways. Something is chronically activating my sns like a latent infection or my sns is just trapped in a loop. I think it's a bit of both but mostly the former.

 

[Violeta]

sb4, so does the POTS keep the sympathetic nervous system in overdrive even when you might be lying down?


I ask because there is someone on twitter who posts in the ME/CFS category, whose doctor told her that her body never relaxes even though she's not mobile.

 

[sb4]

sb4, so does the POTS keep the sympathetic nervous system in overdrive even when you might be lying down?


I ask because there is someone on twitter who posts in the ME/CFS category, whose doctor told her that her body never relaxes even though she's not mobile.

Yeah. Even when I'm lying flat not moving my heart is thumping HARD. It's been like this for 14 years now. It feels like my sympathetic nervous system is just jammed on all the time.
Bizarrely, when it's really bad, even when lying completely flat my heart is racing, pounding very forcefully, and I still feel like not enough blood is getting to my brain. It sort of feels like light headed but different, just like my brain is literally drained of blood. Extremely unpleasant.

I have tried some things to calm the sympathetic system like taking Magnesium Threonate before bed but that just makes the blood drained from head feeling worse. Almost like my heart needs to pump extra hard to get the blood there for some reason.

 

[kushami]

@sb4, I wish you could try out the Lumia gadget and see what it says about blood flow to your brain.

I hope the stellate ganglion block goes well for you and the B12 continues to help in the meantime.

 

[sb4]

@sb4, I wish you could try out the Lumia gadget and see what it says about blood flow to your brain.

I hope the stellate ganglion block goes well for you and the B12 continues to help in the meantime.

Thanks, yeah I hope the b12 doesn't just ware off.

Yeah the lumia gadget looks cool but very expensive. It seems you have to pay for a prescription on top of that too.

 

[Mary]

My b12 had been high on a blood test 13 years ago when I was doing sublingual however I still was suffering from these symptoms despite that. My last B12 test was 7 years ago which showed lowish levels 270 (170-770).

Hi @sb4 - I didn't realize you didn't have ME, though you may very well have posted that before. I can't imagine having a chronic bounding pulse! It would be maddening and scary.

I'm really glad to hear that the B12 injections appear to be helping, at least for now! It's really interesting how the various B's seem to help so many of us, in so many ways. Yeah, if B12 injections are making such a big difference, and you have low stomach acid, it seems quite possible that you may need higher doses of some of the other B vitamins as well.

I remember very well how in 2010 methylfolate gave me a really nice boost in energy but then my potassium tanked within a day or 2 thereafter, causing severe fatigue. But because of Freddd's many posts about potassium and folate, I knew what was going on and started taking potassium which took care of that problem.

Several years later B1 also gave me a big energy boost, followed by severe fatigue, which was low phosphorous this time.

I just want to alert you to the possibility that the B's can be tricky - I know you know that! But be on the lookout for sudden unexplained fatigue hitting - and most doctors won't have a clue about this, it's a form of refeeding syndrome and they've been taught it only affects people who are severely malnourished. I actually have a theory that people with ME/CFS (and maybe you too) are basically malnourished though outwardly we can appear quite healthy! Well, I didn't come up with the theory - I believe it was Chris Armstrong who said we are basically in a state of starvation. Our cells are not getting what they need.

I'll keep my fingers crossed for you and keep us posted --

btw, about the high B12 level on blood work when you were taking sublingual B12, that is often pretty much meaningless. It's very common and can mean that the B12 is not getting into your cells or not being properly metabolized and just floats around in the blood. My B12 was always high on blood work when I was supplementing in various forums, but when my doctor did hair analysis, B12 was basically undetectable and it wasn't until I started taking very high doses of liquid methylcobalamin - 5000 - 10000 mcg a day - and taking it sublingually - that I physically finally felt a difference. I think I finally got enough B12 to actually make it into my cells.

The B vitamins which I noticed making the most difference for me are methylfolate, methylcobalamin, B6 and B1. But I also take a good B complex (bio-active) and B2 for good measure.

 

[sb4]

@Mary I tend to post that I don't have ME on posts where I'm reporting on improvements or worsening with treatments as a reminder that it's probably different in me.

I remember your thread on b-vits and problems with potassium and phosphate. I am indeed supplementing potassium citrate as a precaution.

It's interesting how you had the high b12 level but still found it not to be doing much. It's my understanding that the liver can store a lot of b12, like 5 years worth. You'd think that it would just absorb it all.
Maybe when you do sublingual's it goes in and out too fast for your liver to do much with. Maybe injections deliver it more slowly. I dont know.

Before my first really big collapse in health in 2016 I was messing around with very high doses of methyl folate and I had some good days before being sent into a massive long term downwards spiral. Even though I was taking b12 with it perhaps it wasn't being absorbed and the methyl folate pushed more processes that required b12?

I'm definitely going to start taking high dose b1 again soon. Just waiting on that OAT test.

 

[kushami]

Yes, there’s a purchase cost plus a monthly subscription atvthe moment (and it’s US only).

However, there will be a medical version eventually if all goes to plan. I presume this will be like a blood pressure monitor – a standalone device that you buy that doesn’t require a smartphone, and can be used on anyone. At least, that is what hospitals and doctors will have if it gets to them. And perhaps there will be a version that can be lent out for a week like a Holter monitor.

So in future you may not need to buy one, or it may be a one-off purchase. Fingers crossed!

(There is a research version that doesn’t connect to a smartphone but downloads data to a computer via scientific software. I don’t know many details on that because you have to be a researcher to enquire about it.)

 

[Mary]

I'm definitely going to start taking high dose b1 again soon. Just waiting on that OAT test.

I'd be careful with B1 - start low and go slow, it can be very powerful, like methylfolate. I hope the OAT test results shed some light for you!

 

[Strawberry]

I have made a post briefly describing what it is and a video showing it. Basically it is your heart beating very forcefully (not fast) 24/7.

So this isn’t a normal thing? I definitely get this, and some times my feet pulse too.

 

[sb4]

So this isn’t a normal thing? I definitely get this, and some times my feet pulse too.

Yeah it's not normal. The question is, is it actually uncomfortable. For me its is very uncomfortable. Like the physical force of the beat causes discomfort and the overall effect of the nervous system ramping up (inability to relax, kind of manic feeling when its bad). Also it genuinely feels like blood is struggling to get around my system (muscles burning easily, feel kind of like I'm coming down off a big run but I'm always stuck in the coming down phase).

 

[andyguitar]

Almost like my heart needs to pump extra hard to get the blood there for some reason.

Have you had any investigations from a cardiologist? Any ultrasound or other scans of your heart? Heart valve weakness can be missed and cause a range of symptoms that include some you have.

 

[sb4]

Have you had any investigations from a cardiologist? Any ultrasound or other scans of your heart? Heart valve weakness can be missed and cause a range of symptoms that include some you have.

I had an ultrasound back in 2016 which was normal. Other members of the bounding pulse group have had a variety of heart tests most of which come back normal. It's very frustrating and very much like ME.

I was doing about 5mins of resistance training for a year or so before I stopped due to declining health. A few months before I stopped I was doing bicep curls and I got a horrible pressure shoot back from my heart up the left side of my neck. Every since then the left side of my neck has felt achy and swollen on and off. I had to heavily modify my exercise routine (before stopping completely) as that backflow feeling would come on very easily.

I'm about a year and a bit out from that incident, the achy and swollen feeling still appears on my left neck (often at night) however the intensity is significantly diminished. I think the super pressure build up from bounding pulse + exercise caused a valve to bust open backwards or something.

I've been to the GP several times since then. I have mentioned this but along with a bunch of other more serious problems but nothing has been done. No scans, no ecg, no nothing. I was struggling so much in November I even broke down and cried in front of my GP. Still nothing.

I might go back and try and force the issue, but it just plays in to the whole hyperchondria thing, especially if I get a scan and it comes back fine. It's much better now than it was 6 months ago. Maybe it'll heal on its own?