Anyone else in physical discomfort 24/7?

[sb4]

@hapl808 yeah that sounds rough too. The only thing you haven't listed there that could be worth trying is Ivabradine.

By bounding pulse (or pounding heart) I mean the heart is beating extra (doesn't matter what speed) such that your whole body vibrates with each beat, it can be at its worst extremely uncomfortable.

Think when somebody gets jump scared and says something like "wow, I can feel my heart". That but it never goes away.

@southwestforests Yeah neck discomfort is more of a thing lying down too.

 

[Hip]

I have constant 24/7 cardiovascular discomfort generally from bounding pulse

I don't have this symptom myself, so can't really imagine what it feels like.

But I wonder if vasodilator supplements might help. Maybe the issue might be with constricted blood vessels, which force the heart to work harder to pump blood.

Body builders use nitric oxide-boosting supplements for vasodilation like arginine and citrulline.


Have you ever tried yoga? This can calm the sympathetic nervous system which causes vasoconstriction.

Personally I find yoga quite exhausting since I developed ME/CFS. However, if I restrict to doing just a few yoga poses (asanas) which target the spine, I find this is acceptable in terms of energy expenditure. And also I suspect these spinal poses may be the most powerful ones for calming the sympathetic.

The spinal poses I do are: Upward Facing Dog Pose followed by the Child Pose. Then
the Supine Spinal Twist, the Half Lord of the Fishes, and finally the Standing Side Bend.

 

[wabi-sabi]

keep my hands on my sternum, seems to help relax a bit.

I think this sounds like a good idea.

 

[VisualEffect]

I have constant bounding pulse too, I recognise that feeling from your messages. My TShirt is vibrating each hearbeat. It gets better at night or when I'm relaxed. It gets significantly worse after large meal.
At first two years of this I often felt overstimulated from nothing, but right now this overstimulation feeling has subsided, if not gone. My worst symptom is head pressure/weird head feelings. I don't know if I have POTS, CFS/ME or broken autonomic nervous system (or all of this).

 

[hapl808]

@hapl808 yeah that sounds rough too. The only thing you haven't listed there that could be worth trying is Ivabradine.

I've been thinking about this very drug - wondering if I should try to get an RX for it or just find somewhere to order online. Seems lower risk than some interventions.

 

[sb4]

But I wonder if vasodilator supplements might help. Maybe the issue might be with constricted blood vessels, which force the heart to work harder to pump blood.

Body builders use nitric oxide-boosting supplements for vasodilation like arginine and citrulline.

Have you ever tried yoga? This can calm the sympathetic nervous system which causes vasoconstriction.

I suspect these spinal poses may be the most powerful ones for calming the sympathetic.

The spinal poses I do are: Upward Facing Dog Pose followed by the Child Pose. Then
the Supine Spinal Twist, the Half Lord of the Fishes, and finally the Standing Side Bend.

Generally vasodilation makes everything worse. For example being hot is terrible for it, in fact one of the few things that helps a little is getting very cold (more vasoconstriction). If I were to guess it probably is an issue with excess vasoconstriction in some areas and vasodilation in others, possibly combined with wonky blood volume.

There was a thread a while back about a guy who got temporary remission with NO supplements. I did buy some bodybuilder powder to that effect however stopped taking it after a few days for some reason. Might have to look into it again.

Thanks for the yoga pose recomendations. I will give them a try.
I know there is a yoga class ever week or so in Sheffield for people with ME. I have never gone though. Might check it out one day.

I have constant bounding pulse too, I recognise that feeling from your messages. My TShirt is vibrating each hearbeat. It gets better at night or when I'm relaxed. It gets significantly worse after large meal.
At first two years of this I often felt overstimulated from nothing, but right now this overstimulation feeling has subsided, if not gone. My worst symptom is head pressure/weird head feelings. I don't know if I have POTS, CFS/ME or broken autonomic nervous system (or all of this).

Yeah, with regards to the meals I find it best to have multiple small low carb meals.

I very much relate to your last line. I don't really know what condition I have got either. I don't really fit in, in any community. Just bits of these symptoms and bits of those.

I've been thinking about this very drug - wondering if I should try to get an RX for it or just find somewhere to order online. Seems lower risk than some interventions.

I don't know what country your in but if it has free health care there's no harm in asking a GP for a referral to a POTS specialist then hoping they prescribe it.
Using online pharmacies seems to be pretty reliable in my experience. I think I have ordered over a dozen drugs over the years and not one one has been stopped by customs, and they seem to do what they should do.
For me Ivabradine works on lowering the heart rate but has little effect on the bounding pulse.

 

[bradipa]

By bounding pulse (or pounding heart) I mean the heart is beating extra (doesn't matter what speed) such that your whole body vibrates with each beat, it can be at its worst extremely uncomfortable.

I know the feeling. Have that when I am on my worst, sometimes 24/7 yes, but never longer than a couple of days. I imagine my autonomous nerve system firing randomly in any direction - I have a whole lot of autonomic issues.
Anyway I know it feels really bad. I feel for those who experience that all the time, and hope it can somehow get better

 

[Dysfunkion]

I have constant bounding pulse too, I recognise that feeling from your messages. My TShirt is vibrating each hearbeat. It gets better at night or when I'm relaxed. It gets significantly worse after large meal.
At first two years of this I often felt overstimulated from nothing, but right now this overstimulation feeling has subsided, if not gone. My worst symptom is head pressure/weird head feelings. I don't know if I have POTS, CFS/ME or broken autonomic nervous system (or all of this).

It can shift for me from overstimulated to heavy headed/lead body like/sedated (which can appear in my upper legs/neck/face/head, or what feels like spinal cord). But even when it's heavy it still somehow feels like over activity, hard to describe. When it's in "heavy mode" my heart feels like it's going much slower and needs to work harder but every time I get it checked it's fine so it's like something controlling it but not the heart itself that's the issue. Like Bradipa up there said, it feels like my nervous system itself is just randomly firing the wrong way and it can lead to some very weird chain reactions. Vasodilation from heat tends to also make it all much worse, the cold is more energizing to me cognitively but far less comfortable and I can't function when I'm cold. Can't really win with this.

 

[wabi-sabi]

so it's like something controlling it but not the heart itself that's the issue.

My cardiologist thinks it's the immune system that is messed up and causing this. The heart itself is fine.

I feel much better when I am cold and heat does me in. I think that's from vasodilation. Caffeine, my favorite is English breakfast tea, helps with this a bit, but you have to be extremely careful about causing insomnia.

 

[L'engle]

When awake yes. When asleep generally not though it is possible to feel discomfort while asleep (sleep is not the same as unconsciousness)

Wake up into discomfort from low electrolytes and feel as though energy is being used just by being awake. Falling asleep is a relief.

 

[kushami]

@sb4 , this is a really basic suggestion, so please forgive me if you already tried it many years ago, but how about gently increasing your blood volume with a plain electrolyte/oral rehydration sachet?

And have you ever had IV saline, and did it make any difference?

 

[kushami]

Also wondered of you had read posts on this topic on the DINET forum. Maybe there will be something helpful there:

https://www.dinet.org/search/?&q=bounding pulse&quick=1&search_and_or=and&sortby=relevancy

 

[sb4]

@kushami Blood volume stuff hasn't really worked for me. I have an aversion to salt and generally my thirst is low. I have tried fluid loading with electrolytes with little effect. Not really had IV saline though. I have noticed on one or two occasions where I was feeling really rough and drank some coconut water and felt better however I have been drinking a lot of coconut water over the last couple months without much effect.

Thanks for links. I will read through them today.

 

[skwag]

Hi @sb4 ,

Your situation sounds rough and also a little familiar. At my worst, I've had the bounding pulse that I could feel in my ears, see in my chest, and that would vibrate the bed I was in. I have also had good luck with clonodine, Presently, I don't take it every day. Just when needed. 25mcg is enough to take the adrenaline edge off for me.

I can also relate to the adrenaline dreams you mention. I would describe mine as simply highly stressful. After waking up from them, I usually can't get back to sleep. Some dreams might serve a purpose but these are just useless. They don't concern anything in my life I might be stressed about.

I've been able to correlate this type of dreaming, inability to sleep, poor sleep, and feeling jacked on adrenaline to my diet. If I eat too much protein and/or not enough fat, these symptoms show up. I think too many carbs are also a problem, but maybe in a different way. I've been on a carnivore diet for a while now, but I do remember plenty of POTS and blood sugar issues with carbs.

I also get no joy from vasodilators, It seems vasoconstrictors are better for me. My blood pressure can tend low though, with a narrow pulse pressure. Anyway, this is how i justify my coffee consumption.

Good luck

 

[Blazer95]

i was just like this pre-treatment.

SSRI and antihistamine stuff have improved me lots especially on this shit.

 

[Dysfunkion]

Hi @sb4 ,

Your situation sounds rough and also a little familiar. At my worst, I've had the bounding pulse that I could feel in my ears, see in my chest, and that would vibrate the bed I was in. I have also had good luck with clonodine, Presently, I don't take it every day. Just when needed. 25mcg is enough to take the adrenaline edge off for me.

I can also relate to the adrenaline dreams you mention. I would describe mine as simply highly stressful. After waking up from them, I usually can't get back to sleep. Some dreams might serve a purpose but these are just useless. They don't concern anything in my life I might be stressed about.

I've been able to correlate this type of dreaming, inability to sleep, poor sleep, and feeling jacked on adrenaline to my diet. If I eat too much protein and/or not enough fat, these symptoms show up. I think too many carbs are also a problem, but maybe in a different way. I've been on a carnivore diet for a while now, but I do remember plenty of POTS and blood sugar issues with carbs.

I also get no joy from vasodilators, It seems vasoconstrictors are better for me. My blood pressure can tend low though, with a narrow pulse pressure. Anyway, this is how i justify my coffee consumption.

Good luck

You know what that may be a thing with me too, I feel lot of worse with a low fat diet but protein in general may be an issue which may partially explain my weird peanut butter dilemma as when it is cooked a lot of that probably breaks down in some way (or maybe my immune system is having a reaction to the structure of the protein itself that is altered upon cooking and my body/immune system accepts it after? Just an idea too) but the fat is still fine. But it may also have something to do with other compounds in it breaking down too as it's also clearly an immune centered reaction since it can be potentiated by unrelated other immune irritants to me in general.

I also know what dreams you're talking about, usually it's just random highly distressing situations that could happen, same thing occurs with my thought process when I'm awake during adrenaline dumps. Everything is just about to go wrong in every possible way I am currently worrying about and when it does the world is going to go mad and help double down on my misfortune. It's nonsensical really, I gotta laugh when I finally exit out of that state of mind. Like for common example my PC here has no real issues but when these happen I will constantly fantasize about it breaking and the new one being made soon not working, and then spiraling about having no options anymore forever, and my life suddenly with equally as unlikely situations just suddenly happening all at once like family getting super ill or something out of nowhere.

Coffee is one of my life lines, I wouldn't be able to make it without coffee. I've tried before but just couldn't do anything once it's out of my system. Just keeps everything going in the background even though I can't really get much stimulation out of it anymore.

 

[sb4]

@skwag Thats very interesting. I am currently on 25mcg x3 per day. It's been the biggest thing in 13 years to positively effect my bounding pulse. Diet is important too, though mostly carbs makes it worse.

I did a lot of walking today and yesterday and my legs got tired a lot faster than usual. Could be because of my worsening over the past month or it could be the reduction in bounding pulse is also reducing blood flow. Either way the net is a massive benefit to quality of life.

I might have to try carnivore again. The problem is my POTS comes with slow digestion so things like beef mince just sit in my stomach. I also hate salt. It makes me struggle for simple cheap carnivore meal ideas.

I wonder what has set my body / brain off to be full of adrenaline day and night for like 13 years straight and also why this didn't show up as hyperadrenergic POTS on my tilt table test. They did test for it and my levels where below the cut off.

Somebody posted there personal research paper on ME/CFS a month or so ago that described NET (Norepinephrine Extracellular Transporters) not working well due to Insulin Resistance. Perhaps thats a contributing factor? My amygdala or brainstem or something is getting lit up by persistent infection / autoimmunity / inflammation and sending tons of signals for certain neurons to release noradrenaline, this noradrenaline then doesn't get cleared away by the NETs due to insulin resistance (or something else) and I'm left with a constant pool of noradrenaline telling my heart to pound, my digestion to shut down, my blood vessels to constrict / dilate?

 

[sb4]

i was just like this pre-treatment.

SSRI and antihistamine stuff have improved me lots especially on this shit.

What SSRI and antihistamines may I ask?

Also did you have a bounding pulse 24/7 pre-treatment?

 

[sb4]

@Dysfunkion Yeah with the dreams it's like whatever you were worrying about in the day can and does go wrong spectacularly.

When a couple of my gold fish died I dreamt I had forgotten to feed the fish and they where cannibalising each other. They had also mutated because of this and reproduced massively. Every draw I opened in my house had dead fish and cannibal mutant fish eating there corpses. I kept trying to clean it up and feed them but more and more zombie fish kept showing up.

Another one was when the bath was leaking through the ceiling. I dreamt that the leaking was unstoppable and was destroying the walls. I had to quickly ride into town and find the company that supplied our water to ask them to switch it off before the house collapsed.
I eventually found them and after ages going through customer service I finally meet the guy who signed the deal with my dad, like 30 years ago to supply water to our house. As I'm begging him to shut off the water he reveals to me that when making the deal with my dad, he and my dad didn't get along and he's never liked him since, and because of that he's not going to shut off water to my house and is going to let it crumble.
I don't know what to do so I hurry home and the house is just a crumbled mess on the floor, all our possesions are gone, my parents and I start crying then I wake up heart pounding out of my chest again.
The dream is just retarded. Like why didn't I just shut water off at the mains? What the fuck happened at this weird hand shake water deal with my dad and the guys who owns Severn Trent Water that made him hold a grudge for 30 years so bad that he'd let the house fall down?

I have had so so many of these stupid dreams over the past 13 years. I kinda wish I wrote them all down in to one massive dumb journal.

 

[skwag]

@sb4
The one side effect of clonodine I've noticed is a bit of sluggishness that lasts for a day after taking a dose. It's not too bad at 25mcg, but it does get worse for me at higher doses.

We may differ on the digestion aspect. I had always thought I had rapid gastric emptying. Ground beef (mince) is rough for both of us though. I don't know why exactly, but I can't eat it. Maybe histamine, maybe something about the liquid fat.

I wonder what has set my body / brain off to be full of adrenaline day and night for like 13 years straight and also why this didn't show up as hyperadrenergic POTS on my tilt table test. They did test for it and my levels where below the cut off.

This is strange. I have always assumed I fit into the hyperadrenergic category. Maybe not a great assumption.