Helenamber10 years ago

Hello everyone, I've clicked on 6 to 10 years as that was the highest amount given, but it was 20 years for me.

Zeezeezoo in reply to Helenamber10 years ago

Same for me! Should have had another category!

Reply (0)Report

SyncopeTrust-STARS10 years ago

Dear Helen We are horrified to hear that it took 20 years for a diagnosis. Hopefully you now have a correct diagnosis. We would love to hear your story. info@stars.org.uk Jenni

Helenamber in reply to SyncopeTrust-STARS10 years ago

Hi Jenni, You already have heard it I did a personal story for the STARS website last year. I'm Helen K.

I'd just like to add that if it wasn't for the support from STARS, I still wouldn't have the right diagnosis, so thank you from the bottom of my heart. x

Reply (1)Report

Mdaisy in reply to Helenamber10 years ago

I agree STARS are a very informative charity indeed ..... Amazing well done to all involved

Reply (0)Report

Technotit10 years ago

I've had symptoms on and off for the last 18 years and still awaiting a firm diagnosis - I'm very lucky in that I only faint around once a year on average, the majority of my daily symptoms being a tight feeling in my chest and slowing down of my heart rate which then sorts itself out after around 20 seconds, which is just a bit irritating. I also get really tired sometimes as if someone's flicked an off switch and have to have a 15 minute power nap - fortunately doesn't happen too often and my colleagues have got used to it! Over the years it's been suggested that it's vasovagal syncope or epilepsy (mixture of faints and something that was described by a witness as more like a seizure with altered but not lost consciousness), and the (excellent) neurologist and cardiologist I was referred to after 3 episodes in the last 18 months are currently trying to decide which it is, if it's mild versions of both or hidden option 3! I've had an ILR for the last 4 months, getting the data downloaded again in just over a week but the check a month after implant showed a lot of brady episodes (expected - I have Mobitz 1, which we found out last year from a week-long ECG, it had never showed up on the 6 12-lead ones I'd had previously) and several apparent periods of "asystole" of up to 7 seconds - though these didn't correlate with any symptoms of which I'm aware, other than tiredness, and could have just been due to the device settling in after implantation. So we'll see if any more have been picked up in the last 3 months now everything is nicely healed up! Other than that, we just play the waiting game until the next blackout and see what the recorder says...so should have a diagnosis in the next year or so

sarahwilliam10 years ago

Hi

I also clicked on 6- 10 years, but my diagnosis has now changed again ...after 40 plus years! I do not think I have the latest suggestion having read about it on line.

vickyb52778 years ago

Hi all, voted 6-10yrs but it's actually been almost 23 years!! Started fainting/seizing at 16 years old & was diagnosed a few months ago (now 39) after a positive tilt table test. Was always told it was anxiety until a few really bad episodes where I decided to go private as enough was enough. Thankfully I have medical insurance through work otherwise I'd still be none the wiser as the NHS waiting list is so long I now have an ILR (Implantable Loop Recorder) fitted in my chest & am waiting to have another faint to see if my heart stops with a view to having a pacemaker