Wandering Thoughts

July 19, 2010

Lost

Filed under: Aortic Valves — terence @ 7:24 pm
Tags:

Yesterday, and it’s fine with a cool nor-westerly carrying bunches of cloud out towards the sea. I’ve spent most of the morning in bed and decide I want to get out and amongst that weather. The best option is Mount Ainslie; the track starts not far from our flat; it’s steep enough to be good exercise; and the view from the top will be sweet I figure – cloud patterns over the sprawling land.

About halfway up the track, and puffing heavily, I have one of my ‘memory spells’ – a sense of deja vu and then my memories aren’t my own. Or they are, but they’re not of things that happened. I think they come from dreams. It’s not an overpowering sensation: my conscious mind knows the memories aren’t real, even as my sub-conscious keeps sending them up out of the depths of wherever. It’s not an overpowering sensation: I can function while it’s happening – can hold down conversations. It’s not an overpowering sensation: but it’s troubling. Troubling to be deceived by my mind like that. Also, while the spell is occurring, my own real world memory becomes thoroughly patchy. I could hold a conversation with you, but I probably won’t remember what you said.

Generally, the spells have been less frequent over the last month or so, although they’d been particularly prevalent last week – a response to being tired. So I wasn’t happy to discover I was having one as I walked. But I kept walking, and waited to weather it out.

Except this spell didn’t go – or it went but then came back and went again. Waves of clarity and uncertainty which lasted for the next couple of hours. Only slowly ebbing away in the late afternoon.

No calamity. Like I said I could still function. But frightening at the time: what was happening? why were the rules of unwell being changed? would the spell ever stop? had I forgotten something important?

I don’t want to bang on about this side-effect of the surgery that saved my life. But it’s hard not to fixate on it. Memories, I’ve discovered, however, imperfect, are like maps. Tracing paths from where you were to where you are. And, in doing this, giving you a sense of where you’re going. Lose them and you’re  lost. Or that’s how it feels for me – for the conscious planning part of my brain – that struggles on in their intermittent absence.

And maybe that’s the heart of the problem. Of my worry. Simply that being lost is unnerving – especially when it’s within yourself.

Anyhow, I’m feeling much better today – albeit tired. Off home to rest.

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11 Comments »

  1. Beautiful!

    Comment by irenesavarese — July 25, 2010 @ 1:46 am

  2. Thanks

    Comment by terence — July 25, 2010 @ 10:04 am

  3. […] since open heart surgery I have had spells of something akin to confusion. Deja vu, and a rush of memories of things which never […]

    Pingback by Seizure | Wandering Thoughts — August 17, 2014 @ 8:20 pm

  4. Hi Terence, I found your blog as I was searching for an explanation for why I’m experiencing exactly what you’re experiencing. I had heart surgery in spring 2013 but my first deja vu episode didn’t happen till summer 2014. So very odd.

    Anyway, I’m seeing a neurologist in a couple weeks. I hope you are doing well and keep up the good writing!

    Comment by Jim — July 4, 2016 @ 1:28 am

  5. Hi Jim, sorry to hear that, I’ve encountered (on the internet) I think one or two people with the same problem post open heart surgery.

    About 4 years after I wrote the post above, I had a tonic-clonic seizure (aka epileptic fit) one night when I was asleep. This led to a tentative diagnosis that the memory/de-ja vu spells I describe in the blog above were simple partial seizures. This meant no driving until I had been 6 months without a “simple-partial seizure” (or until 2 years without another tonic-clonic seizure if they felt comfortable in diagnosing the memory/de-ja vu spell as what they call in Australia “safe seizures”). I’m still waiting for this to happen. All of these rules are specific to Australia and may not apply where you live. Though some sort of no driving rule is very likely if you are diagnosed with epilepsy (which you may not be; my diagnosis only happened after until I had the tonic-clonic seizure).

    Having a tentative diagnosis has helped in the sense it’s given me the reassurance of probably knowing what’s going on. It’s also meant anti-epilepsy medication which appears to have reduced the frequency of the memory spells, though hasn’t vanquished them. Some people get side effects from anti-epilepsy medications, I haven’t had particularly bad ones.

    So that’s been my experience since the blog post you’ve just read.

    However, I should hasten to add. It’s only my personal experience. It is no guarantee of your situation. Don’t panic or assume you have the same problem as me. If your neurologist is good, their advice will be much better than my experiences. If you don’t feel like your neurologist takes you seriously, try another one if you can. I’m on my third neurologist and this one’s great. The previous ones were less great.

    Good luck!

    Terence

    Comment by terence — July 4, 2016 @ 10:05 am

  6. Thanks, Terence. I’ll be sure to let you know if I learn anything useful. I’ve never met this neurologist so fingers crossed.

    Jim

    Comment by Jim — July 5, 2016 @ 1:15 am

  7. Good luck Jim.

    Comment by terence — July 5, 2016 @ 10:07 am

  8. Hi again, Terence. I thought I’d update you in case it’s of interest.

    Briefly, my neuro said I’m having focal seizures. Many things could have caused them, my surgery among them. He cannot say for sure.

    He’s putting me on Keppra to prevent the focals from turning into general seizures (the scary convulsive kind). He said meds are effective at preventing generals but not necessarily focals. The reason being that as the name implies the source of a focal could be the size of a pinpoint, so the meds may not reach it. A general encompasses much of the brain and so the meds are more likely to get somewhere effectively.

    So that’s about it. Hope this helps and that you are doing well.

    Jim

    Comment by Jim — July 24, 2016 @ 3:45 am

  9. Thanks Jim,

    Great to hear you got a sensible diagnosis first up. The first neurologist I saw told me I was merely anxious and sent me on my way (though my current Dr is great). As I understand it, a focal seizure is another name for what I probably have.

    That’s really interesting about Kepra being most likely to be useful in preventing tonic-clonic seizures. Thanks for letting me know.

    For me Kepra definitely reduced the frequency of the simple-partial-seizure-type-events, but didn’t get rid of them. Reduced frequency has still been something I definitely appreciate. I had no trouble with Kepra side effects. Though I know some people do. If you do have side-effects issues, there are often good epilepsy support groups around who can offer advice. I got a great booklet a few years ago from an Australian one, which explained everything about my situation really clearly. I don’t know why, but reading it was reassuring.

    Terence

    Comment by terence — July 24, 2016 @ 12:28 pm

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