Patient :Up until January 23rd of this year, I was a very happy, outgoing and relatively healthy 24 year old woman. I had no serious ailments, just the usual things like the common cold/flu or a stomach bug. I was working as a registered nurse full time and was busy planning my wedding and going out with friends. However, on the 23rd of January, all of that changed. Something happened that doctors still cannot explain. I felt a weird rush from the top of my head that went into my chest it was immediately followed by a series of palpitations in my chest and throat and then felt as if I couldn't breathe and I couldn't support my own body weight anymore. I became weak and struggled to catch my breath and My heart rate went up and was sitting between 120-180bpm. This happened while I was at work so I was immediately taken to ED where they did a quick informal/bedside echocardiogram which was clear, they did an ECG which came back as sinus tachycardia. And they took some bloods, all of which came back normal. They kept me there for about 8 hours to observe me and my heart rate stabilised. They said that It was most likely an anxiety or panic attack and that was their official diagnosis. I told the doctors then and there that I am not, not have I ever been, an anxious person. I told them that I could not describe it but something just felt "wrong". They were very condescending and said "everyone who has anxiety doesn't think they have anxiety" then sent me on my way. It only got worse from there, I was back in ED nearly every second day. I constantly feel Dizzy, lightheaded, unsteady on my feet, short of breath, tachycardic, palpitations, this constant feeling that I am falling backwards, weird vibration feelings that I can feel but no one else can, chest pains, aches and pains and a tightness/constricting feeling in my throat. And these symptoms are there ALL. THE. TIME! It seems that with each passing week there is a new symptom to add the ever growing list.
But the doctors take one look at my patient history, see the word "anxiety" and never look any further, they always treat it as anxiety and they dose me with diazepam and send me on my way...
Eventually I went to my GP and asked for a referral to a cardiologist. I went and seen him and told him what had been happening. He was the only person so far, including my family and friends, who believed me when I said I wasn't anxious and that something wasn't right. I was admitted to the cardiac unit twice. Both admissions they found a different diagnosis, the first time they found inappropriate sinus tachycardia, on the second admission they found atrial tachycardia. Finally my cardiologist inserted a loop recorder in me and we also discovered supra-ventricular tachycardia. Finally we knew for sure that though I may have developed anxiety through out this whole horrific process; that wasn't how it started out! However, my cardiologist says that my arrhythmias only account for some of my symptoms and that although they are uncomfortable, I should only feel terrible when they are active which was not all of the time because my loop recorder has shown that I remain in normal sinus rhythm most of the time. My cardiologist booked me in for an ablation and I was hoping that I would wake up and all of it would be over...the horrible symptoms that have left me completely debilitated, dependant and depressed would be gone. This was not the case. My electrophysiology studies did not go according to plan. It was done under a local anaesthetic and mild sedation however they had maxed me out on the midazolam and fentanyl and I was still quite alert and I was awake when I went in to ventricular fibrillation at 300 bpm and was awake when they defibrillated me. They stopped the procedure there and re booked me for the procedure under a general anaesthetic. In the end they were only able to partially ablate the atrial tachycardia because it was so close to the phrenic nerve. The SVT could not be induced long enough to map out so it was left and Inappropriate sinus tachycardia can't be ablated, my recovery was also complicated by bilateral pulmonary emboli that were likely caused by my first procedure and I was commenced on anti coagulants.
My symptoms are still very much so present and are only getting worse! I can no longer stand or sit for greater than 10-20 minutes at a time. I am exhausted after walking to the toilet. I can barley stand in the shower. I collapse and struggle to regain control of my breathing and my heart rate despite being on verapamil 90mg twice a day and 5mg of ivabradine in the morning and 2.5mg at night...
I have had numerous tests:
Blood tests: all normal
MRI and MRA of the brain and neck: normal.
48 hour holter monitor: normal
Echo: normal but with slight MR
ECG and cardiac monitoring: normal
Ultrasounds of abdomen, legs and pelvis: normal
CT abdo/pelvic and brain: normal
Helico bactrim test: normal
Numerous chest X-rays: normal
Scope of the nose and upper throat by an ENT: normal
24 hour urine collection: normal
We established that this isn't anxiety but I am giving up hope that I will ever be well again. It feels like I am slowly dying and my doctors are just standing on the sideline watching it happen. I don't know what to do any more! I am waiting to see a rheumatologist and am waiting for the results of a sleep study I had done by a respiratory specialist. I am running out of options and my doctors have grown frustrated with me. I break down in tears on a daily basis because I have lost so much from what ever is causing this! I can no longer drive, I'm not allowed to shower without supervision incase I fall over or pass out, I don't have the energy to go out and can't even cook dinner for my husband anymore because I can't stand up long enough. I can't clean the house or go for walks. I am losing weight rapidly despite my eating normally and not being able to exercise. I need answers. I thought maybe Lyme disease or something along the hard to diagnose lines but I read that Australia does not really recognise Lyme disease because apparently the ticks here don't carry the bacteria that causes lyme...
I am on the hunt for anyone who might have an idea as to what might be causing this; be it one illness or several things at once. I just want answers.
Please help me...this illness is destroying mine and my families lives!
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