EPILEPSY OR HEART

[Octoman]

Hi all,

Been a very interesting 3 yrs getting to this point of my medical outcome.

Been under health investigation for 3years.... With tests for epilepsy thought to be causing my heart situation of blackouts although they were very infrequent ( twice in 1 year)

It was mentioned that work stress may be contributing to the blackouts so decided to take early retirement at 59.

All test for epilepsy were normal. MRI and EEG. although my neurologist felt medication was the best way forward, so have been taking anti seizure meds for two years.

Cardiology tests were were all normal from the plumbing perspective.

I’m a Non smoker/drinker. 62 year old....

I have been a fitness freak most my life and with unusual sport of underwater hockey (30yrs) free driving 10yrs) so my heart has been accustomed to working very hard with reduced oxygenated blood to the point of near blackouts during these activities, which may have increased my tolerance during brachycardia events possibly hiding the clinical problem? Just my thoughts.....

When I was first taken to A&E having had “possible” seizure for the first time. The medics were discussing my situation when my heart rate suddenly fell to 15bpm for 60 seconds.

They rushed across to check my situation, but I was feeling fine and having a normal conversation much to their surprise while watching my heart monitor.

Well there started the journey to unravel what was wrong?

I was advised to have a internal heart recorder fitted as all other investigations didn’t come up with any firm diagnosis over a period of 18months.

I was now into my third black out during the day, and some very odd moments especially by night. with strange moments of smacking lips, experiencing strange smells, struggling to breath, feeling of detachment for period of 10-20mins thought to be epilepsy.

Middle of last year attended my PACING appointment. The Cardiographer asked how I had been, and reported I’d experienced the odd moment at night as my wife had mentioned, but no blackouts or daytime health concerns.

I asked how the recording were looking and he reported they were fine. Then said “we seem to have had a glitch with the recorder some 4months ago there’s no recordings for a long period” which he didn't expand on and discounted the event as recorder error?

I was then told to arrange another routine follow-up in six months.....

During this intervening period I had a number of very odd moments with body shaking while asleep to wake feeling disoriented.

On my six months follow up, I was asked how I had been, and highlight what my wife had seen, during two occasions in that 6month period.

There were concerned looks from the medical cardiologist registrar who was called from the ward to consult my heart tracings that day.

They reported two cardiac pauses of 45 seconds and 25 secs. The “no” recording glitch wasn’t discussed but I felt this was a likely “pause” but ignored 5 months previously.

It wasn’t discussed further and clearly avoided, although I wanted to know what was found at that time but nothing was relayed back to me......

Well I was admitted immediately onto the cardiac ward as an emergency where I was told a pacemaker was necessary and would be fitted within two days.

The nocturnal sinus pauses I understand can be fatal in some situations, as the heart rescue pacemaker may not always be jolted into action as it would have been during the “blackout” fall during the day.

My question? do I pursue the missed diagnostic information? as this condition could have been treated earlier. The implications could have been grave? I feel I need to know.

Finally I must say the NHS treatment I received was exceptional and without doubt a credit to the cardiac team during my inpatient treatment.

I have no plan to pursue this issue formally, other than from an informative and educational way.

My only Unanswered question: was the first instance a “pause” or fault with my “inserted loop recorder” and for what period was the pause? why didn’t the pacing cardiographer not seek a second opinion at the time?

Im just pleased to have got to the bottom of my medical problem.... Now a possible last question, do I have epilepsy at all? Only time will tell.....

[irene75359]

Sorry I can't help you, I do hope someone will be along shortly who can as your history is quite complex.

In thirty-odd years I have never even heard of anyone else playing Octopush or seen it written - my husband used to play regularly!

[BobD Volunteer]

A very interestsing story but probably not in the right place on the forum. We are here to support people with atrial fibrillation and there may be other areas of Health Unlocked that may better serve you query.

There is no doubt that extreme sports place a serious load on one's heart and we find many endurance athletes presenting with AF so I do tend to agree that it has been your life style which has brought on these events. I can't answer your last question but to me a pacemaker seems an obvoious way forward. An implantable loop recorder such as you describe does not normally have a pacing function by the way. It merely records and stores data from your heart to be read from time to time by the cardiology department.

[AIW58]

Do do some research I read about the connection between epilepsy and long pauses a while ago, when I had a friend diagnosed with epilepsy. I think you are best managed by a neurologist with advice from cardiology if it is the fits that cause the pauses.

Re the missed diagnosis I think it worth asking for a definitive answer. I am a nurse and we need to learn from mistakes and near misses. I suspect you are right and it was a long pause that was dismissed as a glitch.

I'n glad you're having the pacemaker.

Amanda

[Polski]

I wonder if the HealthUnlocked STARS group might be of interest to you?

[Carol70]

My husband (aged 76) was diagnosed some years ago with epilepsy - absent seizures. He is on epileptic medication daily. He has had blackouts and the one he had 14 months ago was diagnosed as a possible heart problem. This turned out to be correct after many tests and December 2018 he had a pacemaker inserted. He has Atrial fibrillation with pauses. Since the pacemaker was inserted, he has had no epileptic episodes, but still has to take daily epileptic meds as well as anticoagulants. He has had no episodes of AF either. I wish you well.

With best wishes

Carol

[daveeb]

Gosh. That sounds, at least to me. Bloody horrible. I've got post traumatic epilepsy., Also heart trouble, you can, hopefully get over it. Good luck kid. Dave

[Thomps95]

Awful - from what you describe I suspect they did miss the opportunity to make an earlier diagnosis - but in my experience, unless you take a formal route, you will have difficulty getting clear answers and will end up feeling frustrated, even stressed. So might be good to decide in advance how much time to spend investigating informally, and when it’s time to just let it go and focus on your own stress levels instead. You might be lucky and informal inquiries could work - but I have my doubts. Practitioners tend to be quite cautious about admitting errors.