alex.jones
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Hello everyone, i've posted on this forum a while ago, then i spent a lot of time in the hospitals, undergoing numerous tests, and still to this day most of the spcialists I am seeing are shrugging their shoulders and are unable to help me. a brief overview of my symptoms, tests, diagnosis, meds I'm taking etc. Main symptoms:palpitations, chest pain (associated with the palps or not), spikes in blood pressure, spikes in heart rate, spikes in both blood pressure and heart rate, muscle aches, muscle weakness - mainly in arms and legs, occassional pins and needles in arms and legs, general feeling of weakness and discomfort, daily headaches, change in heart rate of 20-50 bpm when going from laying down to standing without a significant drop in blood pressure. Tests: ecg's, blood work, chest X rays, head MRI, thoracic and abdominal ultrasound and Ct scan, head cT scan, echocardiogram, stress test, tilt table test, 24 h holter, 48 h Holter, 2 weeks loop monitor, urine analysis, 24 h urine analysis for sodium, potassium and catecholamines, cortrosyn (?) stimulation test. Test results that were "abnormal": occasional pvc's and pac's, consistently elevated heart rate (over 100 even while sleeping, despite all the meds I am on), isolated runs of accellerated junctional rhythm, isolated p wave inversions in ecg's and Holter recordings, positive ANA of homogeneous nature, RNPA of 1.4 (slightly elevated), one ecg revealed some T wave inversions, tilt table test in Jan led to a diagnosis of neurocardiogenic syncope (i fainted 6 min into the tilt) and postural orthostatic tachycardia. What my drs rulled out: adrenal insufficiency, structural heart issues, pheochromocytoma, cardiac related chest pain, thyroid issues, autoimmune issues, anxiety/panic disorders. Medications and supplements I am taking for postural orthostatic tachycardia: propranolol 10 mg bid, prostygmin (mestinon) 30 mg/22.5 mg/15 mg at 8am, 12 pm and 4 pm respectively, florinef 0.1 mg am, 0.05 mg pm, micro K 6 capsules a day, clonazepam 0.25 mg bid, vit D3 3000 IU, vit C 1000 mg, iron 300 mg, vit B12 250 mg, and Tylenol with codeine as needed for chest pain. Last week I had a repeat tilt table test that no longer showed signs of postural tachycardia (sign that the meds I am on are helping?!). Despite that, I still get episodes of palpitations/tachycardia that happen mostly at rest (some in the middle of the night), I get frequent spikes in blood pressure - the scariest one (symptoms wise -i am one of the few people that are symptomatic when my BP increases) was from 100/60 to 158/100, accompanied by an increase in heart rate from 80 to 145 (this happened while I was laying down). The drs recommended I start a supervised exercise regimen in order to recondition my body, so I went to the hospital for that purpose and worked out under the supervision of a kinesiologist - BP and HR constantly monitored before, during and after exercising. I seem to be sending my body in overdrive by exercising, as for hours/days after a training session my heart rate is consistently over 100, plus I have horrible headaches and a generalized feeling of discomfort that forces me to spend all day in bed. Last week during exercising (45 min at 65 W on an upright bike) my HR spiked from 130 to 160 while my BP dropped quite a bit. I was allowed to recover and while initially my heart rate started dropping, I experienced another spike. A team of drs was called, they put me on a heart monitor right away, things looked OK, I was fully aware of what went on around, I even managed to crack a few jokes with the drs, then all of a sudden my HR went from 100 to 220 bpm. This event was recorded on the hospital monitor, but none of the drs wanted to give me any details about the type of arrhythmia involved. One of the drs vigurously massaged my carotid artery, I was given one liter of saline by iv in a short time, blood work was also done, and about 20 min later my heart rate dropped to 100 and it stayed there for the next 16 hours or so, despite my taking my medications as prescribed. 2 days later, around 4 AM I awoke from sleep with a very intense pain in my chest - center chest, radiating into left shoulder, left arm and upper back, and a very rapid heart rate. By the time the ambulance got to my house the heart rate was considerably lower, but not the chest pain. I went to the hospital where i was put on a heart monitor and had blood work done, and couple hours later i was released with no explanation, or follow up plan. the following day - yesterday - as i tried to take a nap in the afternoon I experienced another episode - bp 137/90, hr 133, the bp lowered relatively fast, but the heart rate stayed in the 100's for about 2 hours despite taking an extra propranolol. A lot of times these episodes I am having are accompanied by somethjng that feels like a jolt of electricity in the middle of my chest. My drs are a bit puzzled by this situation and by my symptoms, and despite the episode of 220 bpm heart rate in the hospital are not exactly willing to send me for more tests. Meanwhile my quality of life is non-existent and I can't help but fear for the worst. Dr Rane, if you could read and make some sense of my ramblings, I'd appreciate your opinion on my situation. I am trying to be as calm and level-headed about this, but I just can't help but wonder if there is something that has been overlooked or misinterpreted by the team of drs I am working with. I apologize for the length of this and I hope you'll be able to make some sense of my story. Thank you and I'm looking forward for your answers. Best, Alex PS I forgot to mention I am a 37 yo female, normal weight, non smoker, non drinker, gave up caffeine 1 year ago when these problems started, no family history of heart issues, spent quite a bit of time in bed since the problems started - initially for fear of aggravating the situation, lately because the uncomfortable sustained tachycardia while standing. One more detail - I have days, even weeks when I feel perfectly fine and am able to live "normally" but they alternate with periods of total inactivity due to the severity of the symptoms I experience. Plus, there is no pattern for my symptoms, no evident trigger or cause - they just come out of the blue, and last anywhere from minutes to hours, even days.
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