u/chnagedh

First the magical recovery and then the amount rehabilitation I would need to do to be even 10% of what I was before I even knew all this existed is such a painful thought that keeps entering my mind regularly.

Im honestly stuckbin a situation right now where I dont even feel human anymore. Ive been stuck inside on a house on a bed for 5 years and every year seems to come with a new negative symptom or worsening of existing ones.

And to think at one point I was 22, recently started studying business at university and was at the absolute top shape of my life both physically and mentally. Running 10km regularly, playing sports, partying, giving presentations, building a life. And then all of that slowly taken away. The worst part is I didn't even notice it really. You just wake up one day and see a picture of you from pre covid and dont even recognize it. And no doctor even knows truly whats going on. "Oh Covid damaged your nerves". Ok? So do something about it?? "Drink water and wear socks". Like fucking hell.

I so desperately wish I didnt know now what I didnt know then. But once you experience the stuff that you didnt even know was possible to come from your own body its impossible to forget that. Do I sound crazy or can someone relate? How am I supposed to accept the situation. And the funniest thing is if you saw me you wouldnt probably notice anything wrong superficially.

When the weather got warmer I initially got very low blood pressure and felt lightheaded and brain foggy but these past weeks Ive been having isolated diastolic hypertension. These are my bp readings lately:

105/90 at rest, 115/95 sitting and 120/105 after slight movement/activity. I was doing some work yesterday where I had to raise my arms above my head level for 20 minutes or so and when I sat down by BP was 145/133. I had never seen my diastolic that high.

Ive also been having some hyperpots flares past few months but Im so confused why these are happening right now. Heat could be an explanation but Im not dehydrated at all, I get plently of salt and was even wearing compression socks during that work where I got that high diastolic reading. So if its not dehydration or heat whats going on here?

Is anyone else dealing with stubborn high diastolic >90
with low normal systolic? Or this narrow pulse pressure in general. Would really appreciate some advice. Cant really take any medication that lowers bp much because my systolic gets really low at rest and I get symptomatic. Please advise!

Ive had dysautonomia and POTS since covid and have been dealing with difficult chronic low potassium thats now controlled by potassium supplements but Im confused why there seems to be so many POTS sufferers without potassium issues. Because AFAIK especially the hyperadrenergic/hypovolemic subtypes, causes blood pooling in the lower extremities which on standing reduces venous return, which then the body wrongly interprets as reduced effective circulating volume. That triggers baroreceptor sympathetic activation and RAAS activation which raises renin and aldosterone.

Basically this chronic secondary hyperaldosteronism drives my renal potassium wasting over time, independent of any medication and causes constant low potassium symptoms.

So do most people not have the blood pooling and low venous return issue? Because it seems like so many people are on fluodrocortisone that excretes even more potassium. Can someone explain how that doesnt lead to more people having low potassium issues?

I dont know what the consensus is on whats your best time of day but for me the morning before eating anything is by far the best I feel. I can walk a bit, prepare the food sitting down that I need for the day, no brain fog usually. HR about 60-65 lying down, 75-80 sitting down, and 85-95 standing/walking. BP is solid 110/75.

But after I eat my first meal the day is pretty much over an hour after that. It starts with my blood pressure dropping because all the blood goes to aid digestion and then I feel dizzy and foggy for about two hours. Then heart rate is elevated for the rest of the day. Lying down 75-80, sitting 85-95 and standing/walking 110-130.

Blood pressure drops to 100/80 after the first meal and then few hours before sleeping symptoms are at worst. Heart pounding uncomfortably hard when standing up or just sitting up and even a tiny movement causes a reaction. BP is usually very narrow pulse pressure with a readings like 105/95 at this point. Face often feels strangely hot as well like Ive just exercised. Then my heart rate drops after that to <65 to get ready to sleep.

Does anyone have similar timeline with the way their symptoms present? Im really struggling here and need some advice. I went to the ER a month back and everything was apparently fine but this is taking a massive toll on my health because my heart is constantly punding away from every slight trigger. Its exhausting. My energy is just enough to make myself food during that early window in the morning.

Could my body pick a damn struggle. Ive been going in circles since covid now for 5 dreadful, pathetic, humiliating years. Started slow with some tiredness and pvcs and pacs after covid vaccine, then horrible tachycardia episodes started happening with any activity, then they were triggered simply standing, now I cant even switch positions without triggering it.

But I might finally understand what’s actually going on with my body. Symptoms started after covid and vaccine which is a known trigger for autonomic nervous system damage. Basically my immune system went after the nerves/receptors that regulate blood volume and vascular tone and that regulation is now broken.

Prettty much all the problems arise form how my body compensates chronically low blood volume. But the funny part is that the volume isnt actually low, my body just thinks it is, because the blood pools due to the nerve damages caused by covid. Instead of my kidneys just fixing it by retaining more sodium and water, the whole system is dysregulated. My renin and aldosterone are constantly elevated. My body is trying to compensate and hold onto fluid but it’s not working well enough to bring my volume back to normal. So I’m stuck with high renin/aldosterone AND low blood volume at the same time.

The aldosterone being chronically elevated is why my potassium keeps running low. Its whole job is to tell the kidneys “keep sodium, dump potassium.” So the same broken system that’s failing to fix my volume problem is simultaneously wasting my potassium in the process.

This is something that not a single doctor could tell me while I was doing all kinds of tests for years. In hindsight it seems so obvious and it fits all the issues I was having and now I get why all these numbers (low BP, narrow pulse pressure, high renin/aldosterone, low potassium, high hemoglobin, high heart rate when standing compensating for the blood pressure dropping, vascular stiffness and isolated diastolic hypertension as body tries to keep blood volume up) aren’t separate problems. They’re all downstream of the same issue. It also explains why its getting worse and worse as time goes on. Basically all of my symptoms are compensation mechanisms that my body does because of the initial damage that covid caused. And nothing can fix that damage. Maybe never.

It feels like every year my window keeps getting smaller and smaller, I can do less and less stuff and im getting more and more tired. I fear this will just keep happening indefinitely until my body cant take it anymore. Like even with knowing this, theres nothing to fix it. All treatments Ive tried are causing multiple new problems without fixing the underlying issue. they are just pathetic attempts at putting a bandage on a gunshot wound. Its not a cure.

Ive had POTS for a long time on and off but this year Ive been dealing with extremely debilitating hyperpots. It got me to the ER few months ago after I had food poisoning which basically ramped up every symptom to an unmanageable degree. But now its getting pretty hot where I live and the symptoms are starting to get pretty bad again. Im trying to drink as much liquids as I can and have salt and water constantly next to me. But its still bad already. I dont know how I can handle two months of this heat with this. Im trying to eat smaller meals as well and I have a fan blowing constantly.

Any suggestions to help or manage this condition would be really appreciated.

Ive been dealing with pretty severe dysautonomia and POTS ever since covid. Thats about 5 years now for me. My symptoms started gradually with exercise intolerance, palpitations with exertion and the likes of increased stress and anxiety from ordinary things and muscle twitches just to name a few.

However, In last few months Ive started getting these massive adrenaline surges caused by slightes of body movements. I was literally brushing my teeth sitting down (as I always do), and when I raised the toothbrush to my mouth level I felt this extreme overwhelming adrenaline surge that completely floored me. It just kept going and I had to immediately fall to the floor and I was lying there with toothpaste in my mouth for few minutes, spat it on the floor because I couldnt get up and waited for it to end.

This has happened with varied intensity now on and off for a few months for example when I was lying down on my side about to eat and the moment I bit into my sandwich, I get this same uncontrollable adrenaline surge, or thats at least what I think it is. Its hard to put it into words. Its not an arrhythmia because Ive got a monitor which shows SR. But it can literally be triggered any time by absolutely anything. It floors me instantly which is scary because what if it happens somewhere where I cant lie down immediately. Its 0 to 100 with no warning, just a overarching wave of something adrenaline related is my best guess.

Straining in the bathroom is a big correlation for example, stopping or standing still after moving, eating or more specifically during chewing. Anyone have any idea what this is or how to help? Much appreciated.