I'm having an absolute effing nightmare.
I've been diagnosed with SVT and possible prolonged QT waiting on more testing.
The SVT has my heart rate daily going between 130-210. My highest recorded was 234 I think. Can't remember.
Anyway - since august after covid I have been having daily episodes that last anywhere from a couple of minutes to a couple of hours. Most days I have black outs which look a lot like seizures (they have done all neuro testing, all fine) so putting cardiac seizure like activity down to the SVT which has been caught many times on ECG and loop recorder I currently have in. I've had 6 admissions to bring my HR down. It's debilitating and each and every time the worry never goes away. I can't drive, can't look after my 2 year old on my own, and can't really be on my own.
No real triggers, stopped all caffeine etc all the normal. Medications help my resting HR but not the SVT episodes. If this is all sounding familiar I've posted a couple times before about it and MN has been a great help. I can't remember which username I used though.
Last admission they were putting me on highest priority for EP study and ablation on 6th November. I hadn't heard anything so called the booking office after 47 minutes and they said I wasn't even on the waiting list and would email the doctor to add me to this. So I haven't even been added since my last 8 night admission over 2 weeks ago. Does anyone have any idea on how long this will take? Once I'm added they said I'm high priority, but how long is a piece of string.
I can't live like this anymore. I can't eat, I can't sleep, I'm on the sofa all the time, I'm constantly in pain. I've had 3 months of this and I just want to start getting my life back.
What can I do, the private secretary is on holiday and her emails are being lightly monitored - have emailed to go down this route with no reply.
I'm so lost, I'm a shell of myself and I just want to start building my life again. I'm not working so we're only taking in one income at the moment which makes everything much harder with everything going up and up. I don't even have a referral letter. Just confirmation on my discharge notes that this is what they'll be doing.
Any advise please. I don't even know what I'm asking. I'm desperate.