classic33
Leg End Member
Had one specialist, who for some reason seemed to be a bit more concerned about SUDEP than I wanted to be, for a while, whilst at school.
https://en.wikipedia.org/wiki/Sudden_unexpected_death_in_epilepsy
Any survivors on here, cardiac arrest, heart attack, cancer....
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https://en.wikipedia.org/wiki/Sudden_unexpected_death_in_epilepsy
Slick
Guru
I knoAmiodarone
I went out and did a four mile bike ride this evening.
It hurt a bit as my granite balls chaffed on the saddle a tad.
More seriously, I really did go out for a very, very slow four miler and it felt brilliant. Five days after dropping dead, twice did take some balls though. I thought about it for hours and hours, should I, shouldn't I and just before dark I thought sod it and went out. Glad I did.
I'll probably get a bollocking from the cardiologist on Tuesday morning for doing it but they didn't say I couldn't go gallivanting along farm tracks on a bicycle.
Of course tomorrow and on the Bank Holiday Monday i'll to go out again just to make sure.
I know everyone is very different, but my brother got very angry at the mere suggestion he was overdoing things. He never actually had an attack but they fitted 5 stents and I reported on this thread I think it was and got the same response. My advice would always be do what you feel able without being silly. Enjoy your ride tomorrow.Amiodarone
I went out and did a four mile bike ride this evening.
It hurt a bit as my granite balls chaffed on the saddle a tad.
More seriously, I really did go out for a very, very slow four miler and it felt brilliant. Five days after dropping dead, twice did take some balls though. I thought about it for hours and hours, should I, shouldn't I and just before dark I thought sod it and went out. Glad I did.
I'll probably get a bollocking from the cardiologist on Tuesday morning for doing it but they didn't say I couldn't go gallivanting along farm tracks on a bicycle.
Of course tomorrow and on the Bank Holiday Monday i'll to go out again just to make sure.
classic33
Leg End Member
OP
OP
Colin_P
Guru
Interesting stuff.
From experience I can offer comfort in so far as suddenly dropping dead doesn't hurt a bit. Waking up afterwards is a different matter especially if you have banged your head or smashed your teeth in when you hit the deck.
And also for those medical staff that have observed one of my numerous sudden deaths, they describe it as looking like and easily mistaken for a grand mal fit.
ColinJ
Puzzle game procrastinator!
- Location
- Todmorden - Yorks/Lancs border
Having just made the mistake of doing so, I strongly suggest that those who are equally squeamish do NOT search for information on that subject, and especially suggest not looking at associated images!
slowmotion
Quite dreadful
- Location
- lost somewhere
Oh Dear! A night of insomnia beckons....Having just made the mistake of doing so, I strongly suggest that those who are equally squeamish do NOT search for information on that subject, and especially suggest not looking at associated images!
classic33
Leg End Member
Thing is, if we started stopping doing what they told us to, what would there be to do?I kno
I know everyone is very different, but my brother got very angry at the mere suggestion he was overdoing things. He never actually had an attack but they fitted 5 stents and I reported on this thread I think it was and got the same response. My advice would always be do what you feel able without being silly. Enjoy your ride tomorrow.
No drinking
No smoking
No Illegal Drugs(I'm taking enough legal ones enough as it is)
Cut down on exercise to less than two hours a day
Watch what I eat(There's a five page list of what I can eat somewhere)
Restrict the amount of time I spend reading, sleeping, watching tv(and no closer than 20 foot) to less than an hour for each.
Don't even consider working
I've bone thinning and liver damage due to long term (mis-)use of one lot of medication. Unable to take painkillers, interacts with the AED's.
Bugger em.
Edited to add the word "legal" in ("I'm taking enough ones as it is").
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classic33
Leg End Member
I'm taking enough, no new ones required. Thanks for the offer though.
Edited to add "A Weeks Supply" picture
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classic33
Leg End Member
Slick
Guru
That sounded like a particularly painful episode.
classic33
Leg End Member
Apart from what got me there in the first place, slipping on the ice & landing on my back. I never felt a thing, pain wise.
Idiot wise, another matter.
Good stuff that amiodarone! After 18 months they reduced my dose. I never had any side effects and found I could go outside without a sun blocker. maybe it was you who warned me of the blue man effect?
Good to see the ICD works, great comfort for me! Were you in Calderdale Royal? I was in there for several weeks, most of which was fighting off an infection. Like the staff though. Bugger about the driving ban. That's what I found hardest. I need the car to get to the places I want to ride a bike as I am not keen on the roads around here. Chin up though. The electric bikes where the motor is on the crank, rather than the front or back wheel, seem to get very good reviews.
classic33
Leg End Member
Roads aren't that bad round here!
OP
OP
Colin_P
Guru
Are you still on the Amio? How long were you on it? It is my new obsession to find any and everything out about it.
Oh yes, these were shocks 4 and 5 for me. Don't believe what you read, it does not feel like being kicked in the chest by a horse (have you ever heard of anyone who actually has?) and does not feel like being hit by a baseball bat, no it is like an electric fence jolt, maybe a bit stronger but not an issue. If you are in need of a shock and get one you will feel a lot better straight away! But then you'll either keep calm and carry on or, like me, quickly get into a panicy state knowing what has just happened and what it signifies.
I trust and hope you are in fine fettle and have not been shocked as yet apart from your cardioversion ?
No, Wexham, Slough
Driving, I don't care one bit if I drive ever again, in fact if it were not for work pressures I would have happily hung up the car keys long ago. If you'd asked ten years ago I'd have said something else having once been a proper petrol head. But these days I'd rather not take the risk and more importantly put anyone else at risk. It is amazing how you adapt and get round not having a car these days.
I'm sat here now at home on my own, well the dog is here. Wife at work, kids at school and college and I'm not anxious... yet. But am looking out the window at the lovely sunny morning and thinking about the consequences of going out in it, might have a little potter in the garden later.
Almost a week off the Flecainide and a week on the Amio, although I'm still in the loading dose phase for the Amio I feel better than I have for a long time. Previously I was getting a lot of VT but tried to shrug it off as one of those things. I really don't think the Flec was good for me at all and most of the protection I receiveed was from the massive dose of beta blockers I also take. I hope to hear back from the hospital about the upload I did about an hour ago soon to confirm the erroneous heart activity has reduced.
I have been out on the bike twice since getting home, two four mile rides, very very slow but whilst out there all and every worry washes away. Hell, I even felt normal for a while.
