HeatherHP
I became ill with a virus (cold)on 1 November 2000.Prior to this I was very healthy with normal blood pressure of 120/70. I played A grade field hockey, and veterans athletics (hammer, heavyweight, shotput).I have been a volunteer firefighter with the County Fire Authority in the State of Victoria,Australia for 14 years.I am a master scuba diver. I was hospitalised on 6 November 2000 until 14 June 2001.I was diagnosed with Postural Orthostatic Tachycardia Syndrome on 20 December 2000. I was on cardiac telemetry monitoring for 4 and 1/2 months.Whenever I changed my posture from lying to sitting my pulse would go from 70 to 120 immediately, and on standing to 165 immediately.Sometimes my pulse would even go up to 182 on sitting.I felt I was running a marathon.I had runs of Ventricular Tachycardia, as well as Preliminary Ventricular Contractions. I had Postural Hypotension where my blood pressure would often drop 40 mmHg systolic when I stood up.At other times I could have quite high BP. My professor (the foremost authority in Aust. who apparenly teaches USA doctors about the condition & how to diagnose it)says I am the worst case in Australia, and possibly the world. Whilst in hospital I often had syncope, the worst was 4x a day. The average is now every 3 days.I am consequently confined to a wheelchair. I can become extremely lethargic, where even reaching over to get a glass of water on my bedside table is too much of an effort.I sometimes have carers feed me and offer me drink, as the effort to cut up a meal and then feed myself a full meal is all too much.Though there are other times when I can get up out of bed, do wheelies in my wheelchair, and I was even starting to go to gym and lift weights, and I was practising wheelchair basketball. The thing I find most difficult to live with is the need to lie down at a moments notice when my signs and symptoms come on, because I am upright in the wheelchair.My palms become extremely sweaty, my heart has palpitations, I become short of breath, I become lightheaded,I lose concentration, and if I don't lie down my body will take over and lie down for me through syncope.Sometimes I get very little warning and can blackout in the chair. I also have Post Viral Auto-Immune Neuropathy. I was hospitalised for so long as I was unsafe at home and the doctors undertook a number of tests and procedures, and they were trying a number of different medications. Whilst at the Alfred Hospital in Melbourne Australia,the two relevant procedures I had were a plasma noradrenaline blood test and a right heart V catheter procedure where blood pressures and blood samples were taken in the inferior vena cava below the kidney, in the kidney, in the liver, in the right ventricle, and the jugular vein whilst lying, sitting, standing, and after syncope. I am currenly on 30mg (12 tablets)twice a day of Dihydroergotamine to constrict the blood vessels in my legs to reduce blood pooling (this is normally used for migrane attacks).I am on 1.0mg (10 tablets) Fludrocortisone to increase blood volume and to retain salt in my body.I am on 2.5mg twice a day of Norvasc to dilate my blood vessels in my neck. The condition is worsened during hot temperatures and low atmospheric pressures.I am usually at my best first thing in the morning, with the afternoons and evenings being my worst times.My BP sometimes goes down to 65/36 and consequently I feel terrible. I recently got an infection with temperatures up to 40.6 degrees Celcius (105 degress Farenheight).I was too ill to be at home and was admitted to hospital and I have been in a nursing hostel for the last 13 weeks. I have just got a laptop, as I was unable to sit up for very long, and I am now connected to the internet.Please feel free to respond, as I would love to 'talk' with people who also have the condition.