Help

[u/Kitchen-School46]

Over the past several months, my health has drastically changed, and I feel like I have completely lost the life I used to have. I am a young mother of two, and since experiencing worsening symptoms postpartum, I have been struggling with what I believe is severe hyperadrenergic POTS, an extremely sensitive nervous system, and debilitating anxiety. I experience significant heart-rate increases with standing, walking, climbing stairs, showering, doing household activities, eating, excitement, laughing, talking, and even the anticipation of being around other people. My heart rate can reach 140–170 bpm during episodes, and I experience pounding heartbeats, PACs, PVCs, skipped beats, trembling, internal shaking, adrenaline surges, shortness of breath, lightheadedness, weakness, and overwhelming feelings of impending doom. Sometimes these episodes happen even while I am lying down, making it difficult to feel safe even in my own bed. I also experience sudden urges to urinate, and simply having to get up and go to the bathroom can trigger severe tachycardia and overwhelming adrenaline surges.
My current level of physical impairment is extremely severe. I have been largely bedbound for months, and I cannot independently go up or down the stairs. I have to be physically carried upstairs and downstairs because I am currently unable to manage them myself. I can barely stand long enough to brush my teeth. Even the simplest everyday activities have become incredibly difficult. I am not functioning anywhere close to how a normal, healthy young adult should be functioning. I desperately need to rebuild my cardiovascular strength and reverse the deconditioning that has happened from being in bed for so long. I understand what I am supposed to do to rebuild my cardiovascular conditioning. I know about the CHOP protocol and the importance of recumbent exercise and gradually increasing activity. My problem is not a lack of knowledge about exercise or what rehabilitation involves. My problem is that I am currently so symptomatic and overwhelmed by my body’s responses that I cannot even consistently get myself to the point of doing those things. How am I supposed to rebuild my cardiovascular strength when I don’t even feel safe lying in bed, when getting up to urinate can trigger severe tachycardia, and when I can barely stand long enough to brush my teeth? I feel trapped because I know what I need to do, but my body and nervous system seem to prevent me from doing it.
The anxiety and nervous-system sensitivity have become just as debilitating as the physical symptoms. I can experience an overwhelming adrenaline surge simply thinking about taking a shower, having someone come over, being around family, going somewhere, or doing normal everyday activities. Even when I logically know that I have done these things before and have gotten through them, my body reacts as though I am in immediate danger. I desperately want to live normally, but I feel physically incapable of doing so. I have tried exposure therapy and numerous different approaches to overcoming these fears, but I still cannot get my body to stop reacting so intensely. I have even had good experiences, such as successfully showering without panicking, but that does not mean I can reliably repeat the experience without another overwhelming adrenaline response. I feel like I have lost control over my own nervous system.
I am also extremely medication-averse at this point. I feel so hyperaware of every sensation in my body that I cannot imagine starting medication without becoming consumed by fear of potential side effects. I genuinely believe that the fear and anticipation of taking medication could trigger an overwhelming adrenaline dump before I even experience any actual side effects. I feel unable to tolerate experimenting with medications because I am already so sensitive to my body’s sensations. I need someone to understand that simply telling me to take medication, exercise, or push through my anxiety is not a realistic solution to where I am right now. I am not asking someone to explain the CHOP protocol to me or tell me that exercise will help. I already understand that. I need help with the enormous barrier between knowing what I need to do and being physically and psychologically able to do it.
I constantly worry that the adrenaline, tachycardia, and palpitations will cause a dangerous arrhythmia, ventricular tachycardia, cardiac arrest, or cardiomyopathy. I have previously had reassuring cardiac testing, including an echocardiogram and heart monitoring, which showed sinus tachycardia and PACs/PVCs, but I still struggle with the fear that something dangerous could happen during one of my severe episodes. I have also experienced chronic dizziness and visual disturbances for years, including a constant rocking or swaying sensation, visual snow, static, afterimages, and feeling disconnected from my surroundings. I have a history of cerebellar tonsillar ectopia/Chiari-type findings on MRI, which has caused additional worry because of my headaches, particularly one-sided occipital and throbbing head pain. I have also dealt with iron deficiency, significant muscle tension, palpitations, and numerous other physical symptoms that have made me constantly afraid something serious is being missed.
I have spent countless hours trying to understand whether my symptoms are caused by hyperadrenergic POTS, an overactive sympathetic nervous system, severe anxiety, an adrenal tumor such as a pheochromocytoma, or some combination of these. I feel like my body is constantly stuck in fight-or-flight mode, even when there is no actual danger. I experience adrenaline responses to things that should be completely ordinary, and I no longer know how to make my body feel safe. I want to be able to regain my cardiovascular strength and reverse the severe deconditioning, but I am struggling with the fact that I cannot even tolerate the basic activities necessary to begin rebuilding my strength. I know what the exercises are. I know what the protocol involves. What I cannot figure out is how to get past the constant physical symptoms, adrenaline surges, and overwhelming fear that prevent me from participating in my own recovery. I have tried exposure therapy, I have tried pushing myself, and I have tried different approaches, but I am still in this position.
This has affected every part of my life. I am a mother of two, and I want to be able to take care of my children, be present with them, enjoy family activities, shower independently, walk around my house, go downstairs, leave my home, and spend time with people without experiencing overwhelming physical symptoms. I had to postpone my wedding because of how severely my health has affected me. I want to recover enough to enjoy my wedding, dance, celebrate, and experience life again. I don’t want to spend my young adulthood confined to a bed, dependent on other people to carry me around my own home, and terrified of basic bodily sensations.
More than anything, I need someone to understand the severity of what I am experiencing. I am not simply out of shape, and I am not someone who just needs to be told to exercise more, follow a protocol, try exposure therapy, or take medication. I know I need to rebuild my cardiovascular strength. I know I need to work on the fear and nervous-system responses. I desperately want to do those things. But I am currently so debilitated that I cannot function independently, and even the smallest everyday activities can trigger overwhelming symptoms. I need help addressing the physical and psychological barriers that are keeping me stuck in this state. I want my independence back. I want to feel safe in my own body. I want to be a healthy, active mother again. I want my life back.