I have not had my diagnosis worked out. I started collapsing in my 30s. eventually at 39 yrs i had a pacemaker put in. i was told I had malignant vasovagal but the cardiologist who put in pacemaker wrote sick sinus syndrome. I was told I had many 15 second asystoles. In my notes it says ' heart stoping 18X per minute'. I remember going very cold for hours and sometimes afterwards my teeth stuck together due low oxygen after resuscitated in ambulance.
Then I was not too bad for a few years. My on demand pacemaker DDDR1 was assisting but i was told not to get tired. Then I was having more collapses. I found years later in my notes it says' pacemaker malfunction. Just happened to walk behind curtain saw her losing consciousness BP 80/40 pacing at 40 ' which it was never set at. I had noticed other problems with pacemaker which were ignored by pacemaker sister and cardiologist. Then 5 yrs ago I had fast squeezing in chest after unable to breathe or even sit up for 5 min. I had recurrent respiratory arrests when partially conscious during the squeezing for 3 minutes long each i was told. I could not see or hear or move even a finger but could feel the fast squeezing of my heart and acutely aware of unable to breathe. When I could move when it stopped i took my pulse. The person with me said I kept looking dead when this occurred & even my abdomen and chest was freezing cold for hours. The inability to breathe was horrific and the person with me said it occurred many times and lasted 3 minutes each time and the doctor would not allow oxygen or to ph my cardiologist. since then I had EPS but not full. I was told my pacemaker was confused by rate drop function and it must never be on again. My ECGs disappeared from the hospital and in my notes it appears nothing occurred even though person with me wrote 5 pages what he saw. He pointed to Ventricular Fibrillation on ECG that he saw evewrytime I looked dead and was still. Then i was ventricularly pacing for years with mode switch function on as AF occasionally. My refractory is set wider than anyone else i have been told as i am told my heartblock in AV node is too wide for pacemaker settings. My cardiologist does not know what is wrong with me. One of my children aged 9 was resuscitated & has dilated proximal aorta. My other son has bicuspid aortic valve with some incompetence and heartblock. My mother was in ICU in 30s with heartblock. My father was collapsing from 50 with arrythmias ?just AF. I always felt when tired that my breathing slows to 2 breaths/ minute even before my asystoles before pacemaker inserted. When I had morphine 10 minutes at right dose in spine I kept going unconscios & stopping breathing for 1 minute over 100 times in 4 hours. My lung specialist has said I have weak respiratory muscles and likely central cause too. I also have vein problems. My mother kept collapsing in her 60s (after ICU for heartblock in her 30s) and was put in nursing home with hypertensive dementia at 67 even though under GP for BP control. I have been found to have orthostatic hypertension which only 1% of hypertension is. I am always so tired. I need 3 coffees to get up. If i sit or lie for awhile my BP and pulse drop. I I walk both go up too much. My fingers are swollen. I still collapse and ambulance officers say I have cold arms and legs and pale face even when warm in house and can have normal blood pressure. I had slurred voice when i called ambulance 1st time last year. I just turned 50 this year. The VF VT alarm kept going in one hospital but the doctor kept changing the monitor and the leads 4 times. It kept occurring but nothing was documented by them. I have been told i cannot have a defibrillator pacemaker as the rythm needs printing during the attacks. I have been told if VT there is only 3% survival and I have to have it printed before having the pacemaker that will save my life. I am respected professional myself and have children to bring up. I was told it is a miracle if what the people with me saw and what i describe that i got through it with no assistance but no one will assist me. As it is intermittent it is difficult to diagnose. Could a cardiologist please give me advice