I find that I can¡¯t always get off to sleep quickly enough, so it¡¯s as well we are retired and don¡¯t need to shoot off to work at 5.30 am or something equally unearthly. ?In the last few days, I¡¯ve been bitten or stung in several places by I don¡¯t know what and this results in horribly sleep-disturbing itching. ?Ho-hum¡.
Best
Susan
toggle quoted message
Show quoted text
On 14 Jul 2021, at 07:37, zuiko <
ftog@...> wrote:
Well done, Jude, both physically and intellectually :-)
I would try to improve your sleep, though. ?I treasure my sleep as to lose it increases my chances of losing my brain function in some way in later life.
¡°In later life¡±! ?I¡¯m 67 now and still writing as if I were younger . . . :-)
Chris
I don¡¯t know about brilliant. Wasn¡¯t a brilliant experience for me ?at the time. ?But I went from first time ever Grand Mal seizure (1am in sleep) late in life to where I am now - and recently had carotid surgery without incident. I had two seizures in 2 weeks in that initial incident - both really serious.?
Two ambulances, paramedic, and first responders turned up each time. Meantime my husband had to get me on the floor and do CPR till they arrived and we live in the bush. I frightened everybody except me.?
I told my neurologist when I finally got to him that I knew it sounded odd but I had determined I was not going to worry and he said not odd but that was good. So I embraced what he had to say and followed instructions and it¡¯s worked for me pleased to say.?
But the meds in between were soul destroying prescribed by a random neuro at hospital using out of the ark knowledge frankly. And on discharge took little interest in my case. So you learn quick you have to do battle for yourself.?
I shall find my neurologist¡¯s YouTube chats about the importance of sleep for John ?- I¡¯ve had the lectures about sleep ??
My sleep has been rather disturbed following surgery but I fit sleep in where I can and I don¡¯t worry about when and I¡¯m getting myself back to a better pattern. I just float over it all and do my best. Can¡¯t be rigid about it. Attitude is half the battle.?
I set out to teach myself something new computer wise daily and keep the mind busy - hence the new iPad coming and I might go do a course.?
Just did a great set of slides for an important conference in Windsor (uk) that went well. Was also being shown USA. Chairman of the conference came up to friend who presented that set and said her presentation was far better than his :-) I do laugh at myself sometimes.?
Jude
?
Ye gods, Jude, that is so brilliant that you can really tell it like it is to John and encourage him. ?I do hope he is in a state to take notice.
Best
Susan
From my limited experience John I would say you are not on the right path.?I found initially I was prescribed 1500 mg of absolutely ghastly med, and then it got changed for an equally ghastly med, and then for just as ghastly med. I¡¯m normally a bright and cheerful optimistic person and I went from that to a total weeping mess not able to get out of bed or off the lounge chair - I wept from one end of the day to the end. My husband would confirm the state I was in. I ?felt pretty desperate and I talked about ditching the meds altogether as it was worse than the seizure in my opinion.?
What I did discover is under the health system here you have to go through all the cheap crap meds before they give you the decent stuff which is more expensive.
I approached my GP and said get me the best neurologist in town because I cannot and will not go on like this.?
Scans had showed nothing at all. Didn¡¯t think they would frankly.
But GP got me in front of a good man and he was totally aghast at what had been done to me. ?I had all the testing at his office ¡ª you know stuff stuck all over my head and strobe lighting and all the things they do¡.. nothing. ?Could not reproduce the nocturnal seizure whatsoever.
So I ended up on a child¡¯s dose of Keppra - couldn¡¯t drive for 18 months (thats the law here) and my neuro said he appreciated that I hadn¡¯t hassled him to give me clearance to drive - and when I could I bought myself the red Alfa on the premise if I was back driving I should drive something that tickled my fancy.
Now I know not every case is the same and there¡¯s lots of variables. But you need to get in front of a decent neuro who knows what he¡¯s doing and have the meds reassessed before they kill you. ?
One of the top footballers here Wally Lewis when he retired and went into TV commentary started having seizures to the point he couldn¡¯t work and they did that procedure where they put needles into the trouble spots in the brain and zapped them with laser and he¡¯s been as right as rain ever since. ?Might be worth asking the questions of the right neuro.?
?I still take the meds as a precaution and at last appointment in February he said he doesn¡¯t want to see me for two years and as far as he¡¯s concerned I¡¯m cured.?
Jude?
Hi,
I¡¯m not sure entirely what to say. I had 3 seizures, 6th July 04.30. That was the best (?). I had an aura of 3-4 seconds made it to my bed. Gripped my bed like it was SUSIE!. 0930, no aura. My left leg would have kicked every male here into orbit. Then 10 minutes later another one.
Took me to local hospital. I was prescribed anti-epileptic medicine at set hours, then as ¡°I needed it. Nurse said ¡°well I¡¯ll end my shift in 30 minutes, so who gives a damn. Well it was hopeless, got dressed, matron helped me. Next day orderly said you can¡¯t stay in bed. So with 3 Degrees & an NIH Postdoctoral fellowship. I was left to look at 4 square walls for 48 hours.?
At this stage I gave up: ¡°I¡¯ve had enough, I just want go. Where I do not care
Purler