Seeking Further Insight on Complex Health Issues
Hello everyone, I'm reaching out to see if anyone with expertise in neurology or cardiology might have some advice. I've consulted around ten different physicians, and none have been able to provide clarity on my situation. To give you a better understanding, I’ve been experiencing a range of intricate symptoms since early 2023. These include difficulty swallowing, persistent weakness, particularly on my left side, muscle tightness and spasms, mild gastrointestinal troubles (an endoscopy yielded normal results), issues with balance, cold intolerance, and severe nerve and muscle pain in both calves that, although it lasted for eight months, has improved slightly over time. More worryingly, I've also been having intense suicidal thoughts since this started. Throughout my life, I was quite athletic, until I began experiencing frequent back injuries and strains at age 20. That led to chest discomfort and palpitations—initially noticeable while climbing stairs or feeling faint unexpectedly. This condition escalated rapidly: - I began having episodes of fainting, sometimes in clusters of ten or more, which resulted in significant aftereffects. - I've encountered dangerously low blood pressure, particularly during sleep, sometimes dropping to 70/30 or 60/40, and it's not position-dependent. - My heart rate can fluctuate dramatically between tachycardia and bradycardia, with readings ranging from 40 to 170 bpm without warning. I do experience SVTs and have had ST elevations noted during heightened episodes, with a maximum heart rate hitting 190 bpm. - On the other hand, I also experience mild hypertension at times. These fainting episodes leave me feeling utterly weak, akin to being unable to lift a pencil, and the duration of weakness seems to increase with each occurrence. My mobility drastically deteriorated; I went from walking unassisted to needing a wheelchair, and although I can manage with a cane, my ability to walk properly has been compromised ever since. Prolonged walking leads to difficulties in coordination, as if I cannot accurately sense my limbs’ position or command them effectively. After these fainting fits, I occasionally experience severe full-body tremors that resemble shivering, as well as localized tremors in my limbs. I often feel disoriented, have pale skin and lips, and suffer from a tendency for my right foot to go numb accompanied by stabbing sensations. Additionally, I have a notable intolerance to cold, feeling as though I can rapidly develop hypothermia at temperatures that I used to find tolerable. I've also noted the presence of unexplained low-grade fevers, and the impact on my mood has grown increasingly pronounced. Episodes can trigger bizarre emotional reactions like excessive laughter or crying, heightened sociability, and an overall intensification of feelings—despite retaining a clear mental state. Certain triggers exacerbate my symptoms dramatically, including physical exertion, specific movements, temperature changes, stress, alcohol consumption, and even the act of rising from sleep after fainting. Clinical investigations have already been performed, including a 24-hour EEG to check for epilepsy due to brief moments of confusion and odd behavior during episodes, but results were normal. Tests for thyroid function, complete blood counts, metabolic panels, liver and kidney function, and other standard tests came back within normal ranges. Imaging studies like X-rays, CT scans, and MRIs have also yielded no concerning findings. I was initially diagnosed with POTS, although there's growing skepticism among my healthcare providers about this diagnosis, and many have dismissed my symptoms as attention-seeking behavior, which leaves me feeling frustrated and unheard. Before this started, I was healthy and vibrant, but now, amidst this complex myriad of symptoms, I feel trapped with no answers. Any insights or direction from those who may have insight into similar experiences would be greatly appreciated.
Answers (1)
2/15/2026, 4:20:43 AM
OpenHealth AI
I'm truly sorry to hear about the overwhelming complexity of your health issues and the toll it’s taking on your quality of life. It’s clear you’ve been through a lot and are seeking answers. Let’s break down your situation and highlight some key points, while also providing steps you can take.
Main Points:
- You’re experiencing a variety of severe symptoms, including fainting, muscle spasms, weakness, and emotional changes.
- You have undergone numerous tests with mostly normal results, leading to frustration and feelings of being unheard.
- Your previous diagnosis of POTS (Postural Orthostatic Tachycardia Syndrome) is under scrutiny, and you’re looking for clarity.
Explanation:
The symptoms you describe can arise from various conditions, and it’s understandably distressing when multiple specialists have not reached a consensus. POTS can often present with symptoms like fainting and heart rate variability, but it overlaps with other disorders that can manifest similarly, such as autoimmune conditions, neurological disorders, or metabolic syndromes.
Given that you've experienced a range of neurologic and cardiovascular symptoms alongside emotional challenges, it’s important to consider a holistic approach to your care. Each symptom can be interconnected, impacting both physical and mental health.
Prioritized Next Steps:
-
Document Your Symptoms: Keep a detailed record of your symptoms, their frequency, duration, and any associated triggers or changes throughout the day. This can help you identify patterns and provide detailed information to future healthcare providers.
-
Consider a Comprehensive Evaluation: Seek a specialized clinic or a team that focuses on complex chronic illnesses. A multidisciplinary approach, including cardiology, neurology, and perhaps rheumatology for autoimmune diseases, may provide more comprehensive insights.
-
Mental Health Support: Given the intense feelings and stress you’re experiencing, connecting with a mental health professional who specializes in chronic illness can be extremely beneficial. They can offer coping strategies and might address the feeling of despair and isolation.
-
Lifestyle Adjustments: While awaiting further evaluations, consider lifestyle modifications:
- Hydration and Diet: Staying hydrated can help manage blood pressure. A diet rich in nutrients can support overall health.
- Gentle Exercise: If possible, engage in light exercises like stretching or aquatic therapy, which can improve mobility without overexertion.
- Temperature Management: Dress in layers and keep warm, especially since you mentioned cold intolerance.
-
Support Networks: Joining groups or forums for individuals with chronic health conditions might provide both emotional support and practical insights from those who experience similar struggles.
Closing Thought:
Navigating complex health concerns can be frustrating and exhausting. It’s essential to feel empowered in your health journey, even amid uncertainty. Your symptoms are real, and seeking support in various forms can make a significant difference. Take each day at a time and focus on small manageable steps toward improvement. If you have further queries or need more specific advice regarding your symptoms, feel free to reach out.
Related Questions
Seeking Guidance After Head Injury and Ongoing Symptoms
Hello everyone, I’m reaching out for some guidance regarding my current health situation. I am a 19-year-old female and experienced a slip and fall on stairs last January, which led to a concussion as well as pain in my neck, hip, and shoulder. Initially, I didn't experience confusion, but I did have extreme sensitivity to light and struggled to perform simple tasks like brushing my hair. In February, I went to the emergency room where they discovered I have a benign arachnoid cyst. Additionally, I’ve had past head injuries from motorcycle accidents and encounters while playing soccer. At around two years old, I also had typhoid and chickenpox at ten. I have undergone physical therapy in the past, but it didn't alleviate my symptoms. As I approached March and April, I began to experience pervasive itching, an increase in hunger, troubles with sleep, and my skin started to redden. By May, I developed involuntary movements, difficulties with walking, decreased mobility, and I was struggling with memory loss regarding my friends. I also encountered elevated heart rates and difficulties with bowel movements. Despite undergoing an MRI of my brain and neck that yielded no significant findings, I was prescribed a low-dose of duloxetine for anxiety and pain management. In June and July, I faced excessive sleepiness, gait issues, potential confusion (despite being multilingual), and I had to be hospitalized for internal medicine evaluations. The psychiatric team suspected my situation was not purely anxiety-related but considered the possibility of catatonia or Functional Neurological Disorder (FND) as well as systemic lupus. I was prescribed anti-psychotic medication, specifically lorazepam, but saw no improvements. My autoimmune tests returned normal, yet I had elevated markers of inflammation along with GERD, sinus tachycardia, and confusion. Despite being in acute rehabilitation, I did not achieve significant progress. Moving into September, I consulted a chiropractor who assessed my C1 and C2 vertebrae and noted that I began to walk better, sleep well, and communicate more effectively. My previously diagnosed “PNES” symptoms diminished markedly, and I started experiencing vivid dreams featuring people from my past, whom I had forgotten. Currently, I have been practicing Tai Chi and Qi gong, as well as taking multivitamins and attending therapy. Nevertheless, I am now dealing with significant acid reflux, abdominal and chest discomfort, potential blood in my urine, and symptoms like tinnitus, feelings of faintness, vision disturbances, and intense headaches. I also experience weakness, pain in various body parts, and sensations resembling electric shocks in my back that intensify around my menstrual period, alongside heavy feelings in my legs and ankles. When I lie down, I occasionally find myself jerking awake, and although my full body movements are mostly reduced, I sometimes notice involuntary arm movements. This journey has been incredibly frustrating. I’m committed to my recovery and have been actively seeking advice from my therapist and chiropractor. However, I wish to manage my symptoms better—such as frequent burping, acid regurgitation, and the occasional near-fainting spells while cooking or walking. I have arranged appointments with a sleep specialist due to my vivid dreams and difficulties waking, and with a gastrointestinal specialist. I'm also considering consulting a physiatrist or exploring vestibular therapy. Is there anyone who can offer suggestions or point me toward additional resources for help? I truly appreciate your support and advice. Thank you!
Seeking Guidance for a Friend's Health Crisis
Hello, I'm reaching out for assistance regarding a health emergency involving my 18-year-old female friend who stands at 5 feet 3 inches tall and weighs 108 pounds. She has been experiencing heart palpitations for a continuous 24-hour period. Her medical history includes hypermobile Ehlers-Danlos syndrome (hEDS), autonomic neuropathy, dysautonomia, unspecified convulsions, and episodes of loss of consciousness. We are in the process of determining whether the convulsions she experiences are indeed seizures, but thus far, she has not received proper attention from medical professionals, largely because we lack video evidence of these episodes. Additionally, she is working on gaining a diagnosis for mast cell activation syndrome (MCAS). ### Current Medication Regimen: - Flamotidine: 5 or 10 mg as needed, taken twice daily - Prochlorperazine: 5 mg as needed, taken daily - Testosterone Gel: 1.62% (0.5 pump daily) - Loratadine: 10 mg as needed, taken twice daily - Meloxicam: 7.5 mg taken twice daily - Symbicort inhaler: used twice daily - Albuterol inhaler: as required - Benadryl: as needed She does not consume alcohol, smoke, or use recreational drugs. Typically, her heart palpitations occur less than once a month, but recently, they have intensified, occurring in rapid succession and lasting longer than usual. She has also been suffering from eye fatigue, numbness in her left arm, and feelings of faintness. After much deliberation, we decided to visit the emergency department. Upon exiting the car, she was overwhelmed by a sudden warmth in her chest, which prompted her to proceed toward the ER, supported by two friends who helped her due to a brief episode of pre-syncope. After a few seconds, she regained awareness only to have a full syncope episode upon reaching the ER doors, lasting about a minute. Unfortunately, the nurses at the intake area did not intervene, necessitating the security guard to fetch a wheelchair. It took three people to secure her in the chair due to her inability to cooperate. Upon checking in, she struggled to articulate her thoughts. Once in the treatment room, an EKG was performed, indicating heart rhythm irregularities (details linked below). They proceeded with blood work and initiated IV fluids. The physician inquired about her usual management for these symptoms, suggesting she increase her hydration intake despite her having already consumed various fluids that day (such as Liquid IV, regular water, and electrolyte popsicles)—eschewing caffeine, coffee, and energy drinks entirely. The IV was administered too rapidly and caused her discomfort (one-quarter of a bag in under ten minutes), prompting her to summon a nurse to adjust the flow rate. Two nurses attended her urgently, a response she had never encountered before. However, they left her alone for around thirty minutes, during which she fainted multiple times (ten incidents noticeable to us, not counting extended periods of staring blankly). While conscious, she could call out whenever palpitations occurred, correlating perfectly with what was displayed on the cardiac monitor. We repeatedly had to request the removal of the IV, which was causing her pain, a recurring issue for her due to suspected nerve damage. After the IV, she felt a strong urge to urinate and observed some dehydration, a common experience after IV treatments for her in the past that typically resulted in improvement, accompanied by headaches. Eventually, a doctor examined her, reiterating the need for increased fluid intake before preparing to discharge us. A nurse returned later with discharge paperwork, but following an episode in which she passed out again, the medical team performed an arm drop test (IV still in place) and a sternum rub, neither of which elicited a response. During this period, she displayed slight convulsions; previous episodes had been more severe. Additionally, she often briefly stops breathing before recovering consciousness. A nurse left to find assistance, and we suspect the initial nurse was a trainee. The second nurse observed her condition without taking action, merely conversing with her. Upon regaining awareness, her heart rate soared to 150 beats per minute, prompting a high blood pressure alert (107 over 100). Despite the alarming readings and the audible beeping from the monitor, there was no immediate response from the nursing staff. Throughout this interaction, she struggled to provide coherent answers to questions about her pain level, leading to dismissive remarks from the nurse who insisted on simple yes or no responses. Her hands began to show signs of pooling blood, turning purple, alongside uncontrollable head twitches causing her discomfort. These concerning symptoms did not prompt any response from the staff, and they subsequently discharged us. Testing conducted included two vials of blood, a metabolic panel, and an EKG that showed abnormal indications. The results indicated sinus rhythm with occasional premature ventricular complexes, yet did not test for heart attack scenarios. Upon our departure, she required heavy support to walk, and we assisted her up a flight of stairs as she struggled to maintain stability, walking on her toes. Arriving home, I spoke with my father about the troubling situation, and he advised us to seek care at another hospital for a second opinion, given his personal history with heart attacks and knowledge of cardiac symptoms. At the second hospital, she initially became slightly better but soon nearly lost consciousness while checking in. However, she managed to complete the check-in process independently. We acquired another wheelchair and waited in the lobby, where she fainted two more times. During one of her unconscious episodes, a nurse accidentally dislocated her thumb joint due to her hypermobility. A friend had to support her head to ensure her breathing. Once she regained consciousness, she reacted strongly to the staff’s presence, exhibiting overreactions to even gentle contact, underscoring her sensitivity during these episodes. This resulted in expedited triage, where we again answered basic medical inquiries on her behalf. After another intake assessment, the physician conducted a physical exam, drawing four vials of blood, including tests for markers of heart attacks, which unfortunately returned negative. Another EKG revealed borderline abnormalities, similar to the first one, with normal sinus rhythm but right axis deviation. Additionally, a chest x-ray returned normal results. Following the initiation of another IV and fluid bag, she received anti-nausea medication, but unfortunately experienced an allergic reaction due to her MCAS. The nursing staff seemed skeptical of her condition since her throat didn’t swell, yet her cheeks and skin did. Despite elevating her hydration levels, she still felt nauseous and lightheaded, but thankfully did not pass out again, although other pre-syncope incidents continued. By the appointment's end, her blood pressure stabilized while supine, and she began feeling better, although her previous IV still prompted her to use the restroom frequently. Lab results showed marked differences between the first and second draws. After receiving IV fluids and a few cookies, her sodium levels dropped from 141 to 138, potassium lowered to 3.4 (high), chloride increased to 111 (high), carbon dioxide lowered to 20 (low), and creatinine showed a slight decrease from 1.03 to .98 (high). The second hospital provided additional tests, indicating high BUN levels at 23 but an acceptable BUN/creatinine ratio. One alarming finding was her glucose level, which spiked to 103 without any prior cause, as she had never exceeded 100 before and previously displayed low glucose levels. Abnormal results were also identified regarding her prothrombin time and INR, which were high but have been diagnosed previously without an identifiable cause. She has been advised to continue periodic monitoring. We finally managed to record her suspected seizures on video to present to her primary care physician. These episodes, persisting since August 2025, leave her disoriented post-episode, with about 80% involving convulsions at varying intensity. The challenge remains in distinguishing between true seizure activity and syncope with convulsing symptoms. Her eyes tend to flutter before and after these episodes, often leading her to keep them shut. In total, she has had five echocardiograms, all yielding normal results, with the latest occurring last year, necessitating further testing every three to five years. For reference, the heart monitor displays significant shakiness during her breathing episodes, evidenced by her rapid respiratory rate of 35 upon arrival at the first hospital (typically averaging 16 during stable periods). At the first hospital, the attending nurse downplayed her heart palpitations, suggesting they were simply typical movements, despite her being stationary and correctly calling out when palpitations appeared on the monitor. Thank you for any insights or advice you may be able to offer during this challenging situation.
Pulsating Swelling on the Neck
Recently, I became aware of a peculiar tightness in the left side of my neck one evening. After a few days of discomfort, I began to investigate further and discovered a noticeable swelling. This lump has a pulsating quality that is visibly apparent. Shortly after, I started experiencing an unusual sensation in my nose and extending into my cheeks. It feels akin to being upside down, with a sense of pressure across my facial area. Over the past few weeks, the lump has enlarged, now reaching toward my ear, contributing to a feeling of significant pressure there as well. About two to three weeks ago, I visited the emergency room, where the physician claimed he could scarcely detect the lump. They performed a CT scan without contrast due to my previous mild reaction to it, and nothing abnormal was noted. The doctor was somewhat brusque and condescending, stating that I wasn’t in imminent danger and advised me to follow up with a primary care physician. For several years, I have been on a downward spiral with weight loss and declining health. Initially, I attributed it to depression stemming from my divorce and life circumstances, but I’m beginning to wonder if there might be a deeper connection. In recent weeks, I’ve felt increasingly unwell; my appearance has changed drastically - my eyes appear sunken with dark circles, and my complexion is pale. I was prescribed a course of antibiotics, which I completed, based on the suspicion of a swollen lymph node. At present, I lack health insurance, which makes it challenging to consult a primary care doctor. I would appreciate your insights on this matter. Although it's difficult to capture a clear image demonstrating the size of the lump, I’ll share a picture for context. What are your thoughts on this situation?
Understanding Closed Eye Hallucinations: A Personal Experience
I’m a 33-year-old woman weighing 125 lbs, and I’ve been experiencing something unusual since my teenage years. These experiences, which I’ve learned are referred to as "closed eye hallucinations," involve both visuals and sounds that usually occur independently. I first realized I had these sensations while practicing meditation. They primarily arise when I am in a peaceful state, tuning everything else out. In such moments of quiet, my mind often fills with fleeting images that can either emerge gradually or flash before me, accompanied by distinct phrases that echo internally. Each thought is unique, often presented in different voices and rarely repeats, resembling snippets rather than full conversations. The content of these fleeting images and sounds varies widely and is often quite brief. As a side note, I find these experiences can be quite distracting. I have been diagnosed with symptoms similar to ADHD, although I have never disclosed this aspect of my experiences to anyone. Importantly, I do not induce these hallucinations—they materialize spontaneously and are disconnected from my actions. While I can engage in visual imagination normally, the phenomena I experience differ significantly. It’s akin to having a song lodged in your mind—you hear it persistently, often against your will, but it’s not the same tune repeating itself. On occasion, when I’m feeling particularly emotional, I may experience flashes of disturbing imagery, sometimes accompanied by a heavy sensation in my body. I perceive this as a dual process involving memory formation in my brain and elements of my subconscious. I have speculated about their potential paranormal nature and have explored resources like The Gateway Tapes to understand them better. All these experiences remain strictly internal; I've never encountered genuine visual hallucinations other than mistaking a pile of clothing for my cat. I’ve had only two instances of auditory hallucinations, which sounded like screams just before drifting off to sleep. A few additional notes: - These experiences seem to be intensifying over time, but I’m uncertain whether this is negative. - I initially thought everyone could experience something similar if they practiced meditation, believing it to be a skill one could develop. - As a professional illustrator, I find that these visions often enhance my creativity, helping me visualize concepts for my artwork. I frequently encounter what’s known as the "Tetris effect." For instance, after playing video games, I often hear the game menu sounds replaying in my mind, and if I’ve visited the beach, the sounds of the waves linger as I try to sleep. This phenomenon of ongoing auditory replay is a constant in my life. Currently, I have two different video game sounds mingling with a tune in my head. I can easily have multiple sounds or melodies occupying my mind simultaneously. I suspect that caffeine exacerbates this, as there have been times when it became overwhelming. Additionally, I have experienced dreams containing entire songs with lyrics that I later discovered do not exist. These compositions feel well-crafted, sometimes reminiscent of bands I recognize, yet they remain elusive in reality. It’s notable that I possess minimal musical training. Furthermore, my brother, who is high-functioning bipolar, has also experienced night terrors, which adds another layer to our family’s intricate relationship with these phenomena.
Intense Pain in Left Rib Area During Deep Breaths
An 18-year-old female, weighing around 105 pounds and standing 5 feet 2 inches tall, currently takes Zoloft and Yaz. From time to time, I encounter a sharp and agonizing pain in the area of my left ribs when I take a deep breath. This discomfort, which feels like a sudden stabbing sensation, happens momentarily but is strong enough to leave me short of breath. It’s among the most severe pain I’ve ever experienced. Can someone explain why this occurs? What are the ways to relieve this pain?