Anyone else in physical discomfort 24/7?

[Dysfunkion]

@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.

Yes dreams like that! Honestly we should submit them anonymously to horror movie directors cause it would provide a lot of great content. lol Mine can get very morbid. A lot of them are me forgetting something and then something really bad happening that gets blown way out of proportion. That or there is a situation going on but I'm really lost and helpless because I can't make sense of anything but the fact that something is going very wrong. I'll be trying to do a lot of basic things in the dream as it's all happening but I can't do anything right at all and then the panic gets worse. A lot of them for some reason will always involve bug infestations, just like suddenly bugs everywhere and I can't escape them all for some reason. Like you said there is also a lot of them with my living place suddenly getting destroyed or I'll find myself in my old home and everything will be all wrong in it.

Do you get one's like this though? So what will happen is I'll have a false awakening where I'll believe I woke up but I won't be in my room, I'll be in another bed (in my case it's always my bed in my old bedroom), there will be a very dark ominous feeling, I'll try to move but I can't as the feeling gets worse, and shortly after when I feel like something is about to happen I'll jolt myself awake.

 

[sb4]

@Dysfunkion I can't say I get the one where I wake up in an old bedroom though this could be because I've spent 95% of my life living in the same house.

The blowing out of proportion thing rings true with me. Once I dreamt I was having a meal in a pub I used to go to with my friend, then he decided we should just leave without paying, I was telling him no thats not right just pay but he got up and ran. The cops came and arrested me and I was like "no I can't go to prison, with my health conditions, I can't survive in there" lol then I awoke, my cardiovascular system in mass panic again.

We should start writing the spooky dreams down in an old tattered notebook and just leave them in abandoned buildings and the like.

 

[bradipa]

We should start writing the spooky dreams down in an old tattered notebook and just leave them in abandoned buildings and the like.

I like the idea, @sb4! Yes, morbid's the word that came to my mind, too, @Dysfunkion .
I don't have nightmares any more, just vivid dreams, but lots of false awakenings and lucid dreams. When I false awake, I'm often in my actual bedroom, the situation actually holds a reality check. It takes time for me to find an element that confirms I'm still asleep (all the wile knowing I most likely am).

 

[sb4]

The Clonidine turned out to be a bit of a bust. Not only did I seem to get tolerant to it after like 10 days it also just switches my symptoms up. It reduces the bounding pulse (which great) but increases heart rate in response. I guess my blood flow is being compromised which results in either or both of these responses.

I'm back to being in a horrible state unfortunately. I am in constant, high levels of, cardiovascular discomfort 24/7. A mix of bounding pulse, heart racing, palpitations, and general chest pain.

Last night I was lying still flat in bed with my head tilted down and my legs raised yet I was still light headed and had a heart rate of 90+ (complete with palpitating / pounding) all night. I slept like 3 hrs.

I've lost near 8kg involuntarily over the last month or so. I'm down to eating like 500kcals per day and everything I eat causes my heart to race and pound harder. My stomach feels like its clamed shut and constantly feels sick, no doubt due to lack of blood flow and sympathetic activation.

I even cried in front of my GP today though theres not much they can do. They are going to write to Dr Nick Gall in London and ask if I can have an earlier appointment. I was hoping they'd make me an inpatient and run some tests on my heart but no such luck.

My current strategy is to try clonidine + modafinil + propranolol. The clonidine reduces sympathetic activation throughout the body, the modafinil increases adrenergic stimulation peripherally so I get the vasoconstriction my body needs with hopefully a calmer brain. The propranolol should keep the heart rate a bit more under control and also reduce the force of my heart a bit.

I've already abandoned all the exercise I was doing as of a month ago. Now I'm focusing on spending a lot more of my day sitting and laying down. Hopefully I'll get a combination working that allows me to have some hours of the day not in this horrible amount of discomfort I'm currently in and then I can push the calories up a bit.

EDIT:
I got my medications confused. I am taking modafinil but for some reason I thought it was midodrine. Modafinil does stimulate norepinephrine (and dopamine) though. Means I need to be careful with tolerance on this as well.

For the past day or so I have felt a lot better on the Modafinil although now I'm worried about withdrawal and tolerance.

I should also note that when my symptoms where playing up bad I had a decent amount of neck pain and felt like my brainstem was inflamed. Chicken or egg?

 

[Cipher]

I'm back to being in a horrible state unfortunately. I am in constant, high levels of, cardiovascular discomfort 24/7. A mix of bounding pulse, heart racing, palpitations, and general chest pain.

I'm so sorry to hear this. I presume you haven't gotten an ECG? As you noted before, the term palpitations often includes fast/abnormal heart rhythm, but it seems like depending on the definition source it doesn't always require that:

Spoiler: Palpitations, definition

Heart palpitations (pal-pih-TAY-shuns) are feelings of having a fast-beating, fluttering or pounding heart.

https://www.mayoclinic.org/diseases-conditions/heart-palpitations/symptoms-causes/syc-20373196

Heart palpitations​

Palpitations are feelings or sensations that your heart is pounding or racing. They can be felt in your chest, throat, or neck.
You may:

• Have an unpleasant awareness of your own heartbeat
• Feel like your heart skipped or stopped beats

Your heart's rhythm may be normal or abnormal when you have palpitations.

https://medlineplus.gov/ency/article/003081.htm

Palpitation is a common, unpleasant, and often alarming awareness of heartbeats. It may result from increased conscious perception of the normal cardiac rhythm or from any cardiac arrhythmia producing changes in heart rate, rhythm, or contraction pattern, and may be reported as a skipping, pounding, fluttering, or similar sensation.

https://www.ncbi.nlm.nih.gov/books/NBK202/


While some define it like this:

Palpitations are defined as rapid pulsations or abnormally rapid or irregular beating of the heart. They are often described as the perception of a skipped beat, rapid fluttering in the chest, pounding sensation in the chest or neck, or a flip-flopping in the chest

https://www.ncbi.nlm.nih.gov/books/NBK436016/

It seems like a lot of different heart related conditions can cause it. From reading guidelines it seems like they absolutely should as a minimum do a ECG as an initial evaluation:

A 12-lead electrocardiogram must be performed on every patient complaining of palpitations.

https://www.ncbi.nlm.nih.gov/books/NBK436016/

A 12-lead ECG evaluation is appropriate in all patients who complain of palpitations. In the event that the patient is experiencing palpitations at the time of the ECG, the physician may be able to confirm the diagnosis of arrhythmia. Many ECG findings warrant further cardiac investigation.

https://www.aafp.org/pubs/afp/issues/2005/0215/p743.html

I even cried in front of my GP today though theres not much they can do. They are going to write to Dr Nick Gall in London and ask if I can have an earlier appointment. I was hoping they'd make me an inpatient and run some tests on my heart but no such luck.

They might be reluctant to admit you as an inpatient, but it seems like they absolutely should refer you to do an ECG, especially since you're having chest pains. If you do an ECG it might be best, if possible, to discontinue all heart related meds before (preferably a week or so before, to let potential temporary rebound symptoms pass), so that they don't mask anything.

I've lost near 8kg involuntarily over the last month or so. I'm down to eating like 500kcals per day and everything I eat causes my heart to race and pound harder. My stomach feels like its clamed shut and constantly feels sick, no doubt due to lack of blood flow and sympathetic activation.

Can you elaborate on your stomach symptoms, do you feel bloated, pain, nausea? Is it mainly after food, or always?

 

[sb4]

I'm so sorry to hear this. I presume you haven't had an ECG? As you noted before, the term palpitations often includes fast/abnormal heart rhythm, but it seems like depending on the definition source it doesn't always require that:

Hi Cipher, yes I had that test and others (Week long Holter heart monitor, and echo cardiogram) done the last time I got really bad which was 8 years ago. It was a way bigger ordeal than it should have been to get them including twice being sent directly to A&E by my GP then been sent straight home by A&E with a diagnosis of anxiety. It was not long after this I pushed to get my POTS diagnosis.

They might be reluctant to admit you as an inpatient, but it seems like they absolutely should refer you to do an ECG, especially since you're having chest pains. If you do an ECG it might be best, if possible, to discontinue all heart related meds before (preferably a week or so before, to let potential temporary rebound symptoms pass), so that they don't mask anything.

The problem is I'm being seen by a POTS doctor in London, so my GPs brush me off to them. The problem with that is I seen them like once a year for 15 minute phone call, and they will possibly organize a test for me. The thing is though the POTS doctors are only interested in getting my heart rate down, my heart rate is generally not too bad, its the bounding pulse and other symptoms that are really bad that most POTS patients don't get so the docs don't focus on those issues.

Then next appointment I get I am going to try to really hammer home that these are the issues I need sorting.

Can you elaborate on your stomach symptoms, do you feel bloated, pain, nausea? Is it mainly after food, or always?

It feels like what is happening is when I am at my worst my blood flow is absolutely terrible despite my whole torso painfully vibrating with every beat. My stomach feels clamped shut and sickly, my extremities cold, my sympathetic nervous system jacked up. I'm in constant pain from the bounding pulse and anything I do (that requires more blood flow), exertion, eating, if the room is too hot, causes the whole thing to get worse.

Even when I eat a little bit of something I start wretch coughing and of course my heart rate and heart pounding increase significantly for the next few hours.

Luckily these past few days it's eased off slightly such that I have been getting 1500kcals+ food daily and am not in as much discomfort though I'm still struggling.

What I don't understand is situations like those nights where I am either lying completely flat or head tilt down, my heart is beating so hard my whole torso is vibrating, my heart rate is elevated yet my head is lightheaded and I feel like there's no blood getting to it.
WHY? Where is all the blood going???

The only thing I can think of is blood volume issues (yet I don't crave salt nor fluids and when loading myself with these stuff I don't feel any better just pee more), or theres some sort of fault with my vasoconstriction / dialation where some parts of my vasculature (in my brain?) are getting so constricted that my heart needs to pump extra hard for blood to get through? Still, if this is so why do vasodilators make me feel worse?

 

[Cipher]

Hi Cipher, yes I had that test and others (Week long Holter heart monitor, and echo cardiogram) done the last time I got really bad which was 8 years ago. It was a way bigger ordeal than it should have been to get them including twice being sent directly to A&E by my GP then been sent straight home by A&E with a diagnosis of anxiety.

Did you have the pounding heart feeling back then also, in addition to the POTS?

The only thing I can think of is blood volume issues (yet I don't crave salt nor fluids and when loading myself with these stuff I don't feel any better just pee more)

Maybe fludrocortisone or desmopressin could be worth a try? Is your blood pressure normal?

or theres some sort of fault with my vasoconstriction / dialation where some parts of my vasculature (in my brain?) are getting so constricted that my heart needs to pump extra hard for blood to get through? Still, if this is so why do vasodilators make me feel worse?

Nimodipine might be worth testing, it mainly vasodilates in the brain if I'm not mistaken.

 

[sb4]

@Cipher I've had it 24/7 since disease onset 13 years ago. It's varied in intensity but always been there. So any abnormalities would have been picked up on the scans 8 years ago.

Fludrocortisone and desmopressin would be worth a shot I think, my blood pressure swings from high to lower.

Nimodipine is another good suggestion. I will try to bring these up at my next telephone appointment.

 

[Cipher]

@Cipher I've had it 24/7 since disease onset 13 years ago. It's varied in intensity but always been there. So any abnormalities would have been picked up on the scans 8 years ago.

A long shot, but there might be interesting information in the "raw" ECG reports that your doctor failed to tell you.

Fludrocortisone and desmopressin would be worth a shot I think, my blood pressure swings from high to lower.

I think electrolyte testing is recommended while taking those, especially desmopressin can cause hyponatremi.

I'm in constant pain from the bounding pulse and anything I do (that requires more blood flow), exertion, eating, if the room is too hot, causes the whole thing to get worse.

Is the pain around the heart, or also in other places? Do you have flank pain?

 

[sb4]

@Cipher I would like to see the test results but the NHS don't seem to like patients seeing the raw data. I did do a request for all my records from the NHS a couple years back but it's mainly blood work.

I guess it's more accurate to describe it less as pain and more as a high level of discomfort. I feel it in my chest (heart), abdomen (aorta), and neck (carotid). Those areas are all thumping excessively hard and the discomfort is in those areas.

Even when the bounding pulse settles down to lower levels my stomach is still visibly pulsating and I always feel it. I can see it now at 66kg and I could always see it earlier this year when I was much fatter @90kg.

Thinking more about it, if the problem was just vasoconstriction in the brain that doesn't explain the Worsening symptoms after eating. Which would lead me to believe it's more systemic vascular dysfunction.

However this doesn't make too much sense either as I have had my symptoms reduce significantly briefly upon things like alpha GPC, modafinil, acupuncture. That wouldn't fix endothelial dysfunction in an hour only for it to break again and hour later.

Which brings me back to something in the brain messing with the autonomic system in a strange way that only seems to affect me and a handful of other patients.
Think I'm just going around in circles now.

 

[Violeta]

What I mean by when sleeping is I have adrenaline filled dreams / nightmares constantly and wake up with my heart pounding harder / racing. So when I sleep my pulse is still bounding.

@bradipa I don't get PEM so I don't crash. For me this is my single worst symptom and I've had it consistently for 13 years. Perhaps I'm forever stuck in my own version of a "crash" where my body lets me keep doing things so I keep crashing? That said I have gone through periods of months being almost bed bound and that symptom didn't abate. What you're describing sounds like regular POTS, do you have bounding pulse too?

@wabi-sabi I don't seem to have MCAS problems (touches wood). I have noticed that lying on my back is better for heart pounding and I do what @Mary says and keep my hands on my sternum, seems to help relax a bit.

I have taken my blood pressure when my heart is bounding and it seems to be irrelevant. It can be high, low, or normal. Same with heart rate. The bounding pulse is a separate thing.

Yeah it seems a small but significant amount of people got the bounding pulse after covid.

Yeah hopefully it's not hurting my heart, I think those who have periods where their heart isn't playing up (when lying down or sleeping) will probably be fine. It's just mine never gets any rest.

So far today has gone actually surprisingly quite well. This morning was miserable as it has been for over a month now but for the last 7hrs or so I have felt surprisingly somewhat relaxed which is super rare for me. I think its the clonidine. I'm going to keep the dose as low as possible because it's a drug that will cause downregulation of symptoms with long term use.

See what you think about the symptoms for needing homeopathic selenium.

http://www.homeoint.org/books/boericmm/s/sel.htm

 

[sb4]

Sleep.--Sleep prevented by pulsation in all vessels, worse abdomen. Sleepless until midnight, awakens early and always same hour.

@Violeta This is a relatively accurate description however I can get to sleep before midnight.

I have taken selenium before without much difference. How would homeopathic selenium be any different.

 

[Violeta]

@Violeta This is a relatively accurate description however I can get to sleep before midnight.

I have taken selenium before without much difference. How would homeopathic selenium be any different.

I don't think it would be much different.

 

[sb4]

I'm trying to think why I can be lying down in bed, perfectly still, and feel like not enough blood is in my brain even though my heart rate is 80-90, my heart is beating so forcefully my whole torso and neck is vibrating, and my extremities are cold and vasoconstricted.

Unless there's a blockage, which I highly doubt, then blood has to be getting to my brain. It feels like the blood is either not dropping off its nutrients (endothelial dysfunction, etc) or the oxygen is getting dropped off but used up by something else.

This results in my cardiovascular system constricting my blood vessels, and pumping blood faster and harder to perfuse the brain.

I'm not sure this effect is limited to the brain either as I get a similar reaction to eating etc.

I remember reading an article by Cort a while ago about some patients venous return having too much oxygen. Perhaps thats happening in me?

Maybe most peoples bodies respond to this situation by inducing PEM, forcing less blood / energy usage, yet my bodies solution is to just pump blood harder instead, to force perfusion to the brain / organs?

 

[Violeta]

Maybe your brain is swollen.

(I hope you don't mind me brainstorming.)

 

[sb4]

@Violeta I love a good brainstorm!

It's possible, doesn't really feel swollen, though the brain doesn't have nerves.

I'm leaning towards endothelial dysfunction / damage + neuroinflammation / nervous system dysregulation. It's somehow tampering with my bodies use of blood nutrients leading to a need for more / faster / forceful blood.

 

[kushami]

@sb4, it’s not much comfort right now, but if all goes well there will be a way to get your cerebral blood flow measured fairly easily in a few years.

I am holding out for it (it will be a longer wait here in Australia). I imagine it will get to the UK a bit sooner than us.

More brainstorming: I have a condition in which the arterioles (next branch after arteries) constrict abnormally and won’t let enough blood into my brain. It is not positional in my case, although I do feel worse when standing still.

It comes with high blood pressure that looks like normal age-related high blood pressure but isn’t.

Dr Novak calls it hypertensive-type orthostatic cerebral hypoperfusion syndrome (OCHOS), and believes it is autoimmune.

I’m a slightly atypical case, because my symptoms follow a circadian rhythm rather than being positional. But I respond to the treatment he recommends (vasodilators) and nothing else explains my symptoms, so I consider it my diagnosis.

You think maybe your body is pumping hard to try to get blood to the brain; I think mine is raising blood pressure for the same reason.

I’m sorry not to reread the thread, but have you tried vasodilators (carefully, given that your BP fluctuates)?

Edit: Just read where you said vasodilation makes things worse. Ugh, sorry. I wonder if nimodipine would be different, given it is somewhat selective for the brain? I got some from AllDayChemist to try. I found that it worked, but I got an odd side effect so went back to my old standby. The side effect may in fact have been caused by taking slightly too much, i.e. excessive blood flow, but as I can’t measure it, there’s no way of knowing.

 

[kushami]

A different tack: have you ever taken steroids and did it help? Obviously not good for long term, but maybe it could help narrow down the problem.

I took a short course of steroids two years ago and was completely normal for a week. Stupidly, instead of finishing the bottle, I stopped as per doctor’s advice (for settling an itching attack). I did get partial remission for three months afterwards and one problem never came back.

Next time I took them, for a month – nothing. Did get rid of nasty rash though, and my skin felt lovely.

Am planning to try again soon.

 

[sb4]

it’s not much comfort right now, but if all goes well there will be a way to get your cerebral blood flow measured fairly easily in a few years.

That sounds really cool. Though I imagine convincing the GP to get the test done will be a battle in itself. If I were a bitcoin millionaire I'd have all the tests done. I imagine it's a similar situation in Australia as well.

More brainstorming: I have a condition in which the arterioles (next branch after arteries) constrict abnormally and won’t let enough blood into my brain. It is not positional in my case, although I do feel worse when standing still.

That is very interesting, and strange. I wonder why it only effects the arterioles? A certain receptor particular to the arterioles?

How did you find out you had this condition?

Something like that could be going on with me though the issue with that is I have a bounding pulse primarily in my Chest, Abdomen, and Neck. It gets worse when I eat. So it seems at the very least I have trouble pumping blood to the brain AND gut. Makes me think it's more of a systemic issue.

A different tack: have you ever taken steroids and did it help? Obviously not good for long term, but maybe it could help narrow down the problem.

I've not. I've taken Testosterone and Rapamycin which may have some immune suppression effects but nothing like Prednisone. I actually had some prednisone that I bought for my cat from an overseas pharmacy which I was going to try but I lost it.

I do like this brainstorming though. It's making me think.

I tried clonidine again in a smaller dose this morning when I couldn't sleep. The heart pounding reduced to the point I was able to relax somewhat. So adrenaline is tide to this somehow. It could be from causing vasoconstriction in certain arteries or it could just be signaling the heart to thump harder.
The only issue with this is when I did my tilt table test my adrenaline wasn't high enough to trigger a dx of hyper adrenergic pots. Also, other people with amped up sympathetic nervous systems don't get 24/7 pounding heart, they get high blood pressure and other stuff.

 

[sb4]

Was watching a video on heart failure as you do and I came across high-output heart failure.

It's different from the regular left sided and right sided types in that instead of causing low cardiac output, it causes high cardiac output.

Its usually caused by sepsis, amenia, hyperthyroid, low b1, etc.

Basically theres systemic vasodilation (including in the heart itself), this means the systemic resistance the blood is pushing against is low but there is a lot of space to push it through. So to maintain Blood Pressure the cardiac output has to increase (heart beats hard). The left ventricle is dilated and full of blood and pushes it hard out of the aorta.

This could cause a bounding pulse, or so chatGPT thinks. The body then compensates by jamming on the sympathetic nervous system to constrict the blood vessels and make the heart contract harder.

My sympathetic nervous system has been jammed on for sure for the last 13 years. Inability to relax, terrible sleep, mind racing, slow gastric emptying, goosebump (vasoconstriction) in the heat, dry mouth, and of course pounding heart.

This video explains it better

Anyway so what if there is something causing systemic vasodilation for some reason (very mild form of sepsis from gut issues? endothelial dysfunction from autoimmunity / latent viruses?). Then more blood needs to be pumped as there is much more space to have to pump it in. So the body increases SNS activity to vasoconstrict and make the heart work harder.

This would explain the intensity of the pulse closer to the heart but how it dissipates to normal BP when it reaches say the arm (where everyone takes their BP).

This still doesn't really fit, but something like this could be going on.