Still no diagnosis Following Syncope!

[Chelston]

Hi, just over a year ago I collapsed whilst driving. Miraculously my wife brought the car to a halt and we are still here to tell the tale. Since then, I have had every test you could imagine and a loop recorder fitted last March which has picked up about four episodes of AT and VT, mostly when I am asleep. The last event was at 4am last November and lasted about seven seconds which not surprisingly woke me up!

During this period, my normal Cardiologist suspected this to be linked to my syncopal episode and referred me for a second opinion to St George’s to see another specialist who recommended an EEG which has since ruled out epilepsy which is reassuring. He also asked that I complete a 24 hour urine test to assess catecholamine levels, which having researched (without explanation from my Cardiologist) is to test for possible adrenal tumours which can cause VT and other cardiac irregularities.

The results of the test appear ok with exception of my Normetanephrine level which is high, but according to the Cardiologist providing the second opinion “is not a problem”. This has left me doubtful about the advice and support I am getting. All things being equal, I am a fit 66 year old, work full time and push myself physically. However, I can’t help but feel that the Cardiologist(s) I have seen are simply waiting for my ILR to record an even more dramatic event before taking action! Unsure what my next steps should be at this stage but this all proving to be extremely frustrating! I am now inclined to see my GP given the elevated urine test results and remain unconvinced that my Cardiologist actually knows what he is looking at!! Any advice greatly appreciated. Thanks 😊

[Eldot]

Blimey, this is very similar to what I had on the M25 last October, although I just managed to stay conscious. So far all the tests have been negative and "sadly/happily" I have had no further presyncope episodes for my ILR to record. I agree it is disappointing they don't know what caused it, but we're just going to have to be patient and wait and see if it happens again.

[Chelston in reply to Eldot]

Hi Eldot, I am pleased that you have not had any further syncopal events since last October. It is quite a bizarre thought that we are both relieved but on the other hand, expect/await the next event to enable the ILR to collect data. One Cardiologist suggested the “the Swiss cheese theory” to me, that it was a million to one chance that all the holes (of the cheese) were aligned when I collapsed……,not entirely sure I buy into this, but interesting thought nevertheless! Thanks

[bridgeit]

Hello Chelston. I had a similar experience while driving through a busy city a couple of years ago. I managed to stay conscious, but it was a struggle and scared the bejeebers out of me. I ended up in A&E and was then referred on to a syncope clinic. I too had a range of heart tests which identified no change/deterioration that pointed to an obvious cause. Then an enterprising doctor in the syncope clinic hypothesized that it could be the result of disturbed magnesium levels as a result of taking lansoprazole medication. My magnesium was indeed low. My medication was changed and magnesium levels returned to normal. I've not had a fainting spell since.

Just a thought. 🤔

[Eldot in reply to bridgeit]

6 bridgeit Yes, I agree with that doctor. My working theory for me is that was caused by Electrolyte Imbalance triggered by dehydration. This is more likely when I am traveling / driving and want to avoid the need for a toilet stop. Dehydration can also happen at night to avoid having to wake up for pee.

[bridgeit in reply to Eldot]

Good point Eldot. I recall medics in hospital checking mum for de-hydration whenever she'd had a "funny turn" (usually followed by a fall). More often than not, she hadn't been drinking enough fluid, more out of forgetfulness than anything else. I tried to head this off by putting a jug of fresh water on the worktop every morning and saying that she had to drink all of it by the end of the day. It was a standing joke between us - she'd forget it was there! 😊

[Chelston]

Hi Thatwasunexpected. You are right of course. The specialists can only act on data. The frustrating thing is that my ILR has recorded several 7-8 second bursts of VT, which is scary enough when it happens and particularly odd when I am asleep! I have a follow up appointment shortly so will see what they have to say! Thanks

[MummaSoap in reply to Chelston]

Hi Chelston

Sorry to ask (and please feel free to say no to answering) but what symptoms do you get when you are woken by these episodes?

I only ask because I had a syncope episode in March 2021 when (unknowingly) I was 3 months pregnant and haven’t lost consciousness since. I’ve had several holter monitors (1 of which picked up an episode of SVT that I was given no additional information about) and an exercise stress ECG test but as yet feel no further forward.

However since starting 2 new medications end of December/beginning of January, I’ve had 5 instances where I have woken up feeling like I can’t breathe or possibly had stopped breathing, with my heart racing and pounding like it’s going to burst from my chest and I’m really sweaty.

Having read your post, I’m now wondering if I too could possibly be experiencing episodes when I’m asleep. Does any of what I’ve described sound familiar to you?

Thank you for your time and I sincerely hope that you get some answers to help you move forward.

Best wishes

Soap

[Chelston in reply to MummaSoap]

Hi MummaSoap, your events do sound rather similar to my experiences. Three days prior to my collapse at the wheel, just over a year ago, I had what I can only describe as pre syncope on Xmas morning waking in a cold sweat which was pretty scary! I have been told that I was near to fainting whilst laying down which seems odd!! Since then, over the past year I have had three other events. Two where I was asleep in front of the TV at 11pm ish and second at 0452 which woke me in a blind panic. On all occasions, my heart was racing between 160 - 180 bpm for about 7-8 seconds. Are you on meds and have you been fitted with an ILR. Thanks for replying …., you always tend to think you are the only one, but how wrong we all are! Regards

[MummaSoap in reply to Chelston]

Wow, it sounds like you’ve really been on a rollercoaster ride with it! How did they know that you were close to fainting whilst led down if you don’t mind me asking?

I’m on ivabradine and dapagliflozin but no ILR - I don’t actually know what that is, sorry 🙈 how did you come to get that?

On the 25th January, I somehow managed to make a 30 minute journey home with my 3 children in the car whilst feeling like I was going to collapse, was extremely hot and came out in a cold sweat and my hands started to feel “weak”. I had to brief my 4 year old on where we were near, and what to do if mummy went to sleep and told him that mummy will stop the car if she feels like she is going to sleep. When I think about it now, it actually really upsets me that I put them through that. I still don’t know how I actually got back that day and when I got home, my mum had to help me into the house and then I ended up on the loo with a poorly tummy and struggling to stay conscious - it was so weird!

Are you allowed to drive again yet? Also, do you have medication for your SVT episodes or do they just correct themselves?