Frankenstein

[Phil]

Frankenstein

My Nephrologist has been nagging me for the last year to go and have these tests done.

https://en.wikipedia.org/wiki/Polysomnography

Day 1 - Here I am all wired up - “Frankenstein, where is the lightning strike?”
(the only place not wired up was dicky and his 2 mates :lol: :lol: )


Results Tuesday morning, so have to spend another night.
Results show:-

RLS
restless-legs-syndrome

SA
what-is-sleep-apnea

So on Tuesday night I was hooked up to a CPAP machine. (not CRAP!)

I now await the results to see what type of machine I need.
(Monday Test shows I stop breathing in my sleep, often and far too long up to 35 seconds)

You are isolated in a room with a bathroom, you only see someone when they come in to check blood pressure or bring food. No TV!
I went armed with 2 books and music on my 'other' phone.
A dinner without wine is just not a meal. So a bottle of dry white and a Chardonnay went as well.


If you press the panic button, someone is there in less than 5 seconds!

My final word on this subject “F--k-It” I did not get old to have to deal with this type of sh1t.

Cheers
Phil

 

[RogerS]

Frankenstein

My Nephrologist has been nagging me for the last year to go and have these tests done.

https://en.wikipedia.org/wiki/Polysomnography

Day 1 - Here I am all wired up - “Frankenstein, where is the lightning strike?”
(the only place not wired up was dicky and his 2 mates :lol: :lol: )


Results Tuesday morning, so have to spend another night.
Results show:-

RLS
restless-legs-syndrome

SA
what-is-sleep-apnea

So on Tuesday night I was hooked up to a CPAP machine. (not CRAP!)

I now await the results to see what type of machine I need.
(Monday Test shows I stop breathing in my sleep, often and far too long up to 35 seconds)

You are isolated in a room with a bathroom, you only see someone when they come in to check blood pressure or bring food. No TV!
I went armed with 2 books and music on my 'other' phone.
A dinner without wine is just not a meal. So a bottle of dry white and a Chardonnay went as well.


If you press the panic button, someone is there in less than 5 seconds!

My final word on this subject “F--k-It” I did not get old to have to deal with this type of sh1t.

Cheers
Phil

You don't have to There's a nice place in Switzerland will sort you out.

PS How on earth did you manage to sleep with all those wires attached plus something to dig into your side as you turn over ?

 

[Malc2098]

My daughter was wired up for a week at the Chalfont Centre for Epilepsy. The wires got squeezed in the door between her room and the bathroom. And two CCTV cameras. To observe her fseizures and how many she had in her sleep.

She couldn't leave the room for the whole week.

 

[Mike G]

.......Results show:-
RLS
restless-legs-syndrome........

My wife has this. She is completely oblivious to it, but it can drive me nuts! She keeps better time than Nick Mason.

 

[marineboy]

I envy your wife being oblivious. I have restless arms from time to time, and it is the most intolerable physical sensation I know that is not actually painful.

 

[Phil]

My daughter was wired up for a week at the Chalfont Centre for Epilepsy. The wires got squeezed in the door between her room and the bathroom. And two CCTV cameras. To observe her fseizures and how many she had in her sleep.

She couldn't leave the room for the whole week.

Malc, she has my sympathy.
It is a lonely uncomfortable experience.

.......Results show:-
RLS restless-legs-syndrome........

My wife has this. She is completely oblivious to it, but it can drive me nuts! She keeps better time than Nick Mason.

Mike you have my sympathy :shock:
I now have Oxpola pills to take at night.
More bloody pills to add to the collection. :x :x

 

[Phil]

You don't have to There's a nice place in Switzerland will sort you out.


PS How on earth did you manage to sleep with all those wires attached plus something to dig into your side as you turn over ?

Switzerland? Thanks Roger. Presume you will sponsor the costs? :lol: :lol:

It looks worse than what is is. You get sleeping pills to help knock you out.

 

[Malc2098]

Thanks, Phil. 24 h would be enough for me so you have mine, too. But family and friends called in every day to break up the days for here.

 

[Woodster]

There is no way I could sleep with all those wires attached. When they up their game and start using wireless sensors then I can see it might be very useful.

 

[Malc2098]

There is no way I could sleep with all those wires attached. When they up their game and start using wireless sensors then I can see it might be very useful.

Unfortunately, living with epileptic seizures such as she has was worth having the electrodes glued to her scalp for a week. There's a possibility, that the area of the brain that has been damaged in the crash is that small, that it could be removed and the seizures along with it. We won't know until the analysis has been interpreted. That's still 6 or 7 weeks away.

 

[RogerS]

I was gobsmacked at the brain op on that violinist. But what I don't understand is just how they'd know that they shouldn't be cutting in a certain area. Does her playing start to falter but if so then surely it's too late ?

 

[SamQ aka Ah! Q!]

Didnt see the prog RogerS, but the brain is well mapped these days. We had quite a briefing when my mother had Parkinson's and the 'Crown of Thorns' was debated to position a liquid nitrogen cauteristion.

Sam

 

[Rod]

I suffer from RLS, as did my mother and does my sister.
I notice it when I’m really tired but cannot get to sleep like on a long overnight flight.
Does not effect my wife anymore as we now sleep in separate bedrooms not just for RLS but other medical conditions.

My SIL is a Neurosurgeon, I’ll ask him about the surgery techniques

Rod

 

[RogerS]

I suffer from RLS, as did my mother and does my sister.
I notice it when I’m really tired but cannot get to sleep like on a long overnight flight.
Does not effect my wife anymore as we now sleep in separate bedrooms not just for RLS but other medical conditions.

My SIL is a Neurosurgeon, I’ll ask him about the surgery techniques

Rod

Oh, yes please...would be very interested.

 

[TrimTheKing]

I was gobsmacked at the brain op on that violinist. But what I don't understand is just how they'd know that they shouldn't be cutting in a certain area. Does her playing start to falter but if so then surely it's too late ?

Exactly that. I've seen one similar where the tumour was near the speech centre so they had a screen above the person and they were awake reading something out. They cut away slowly and minutely until the person stumbles over a word, then then stop. They wait a bit until things stabilise again (the brain is incredibly resilient) then carry on in another area until they've taken as much as they can without impact.

 

[AndyP]

Phil,
I so hope the tests are worthwhile but understand totally your frustration. Hang in there.

 

[AndyP]

My daughter has had more eegs (electroencephalogram) than I care to mention and although a brain activity can be measured and be seen to increase when flashing lights (photosensitive) ins induced she has never had a seizure as a result light stimulants.
A 24 hour test, like Malc's daughter had, was inclusive as she did not have a seizure while being monitored.
Not sure if a week long test is available but we may well ask during our visit next week.

Another day off school today after two seizures early this morning, while sleeping.

 

[Malc2098]

That's rough, Andy.

My daughter was advised that when she has a seizure during sleep, the two hours beforehand and the two hours after can be discounted in terms of sleep, and so the body and brain has been sleep deprived for that length of time and has to catch up.

 

[AndyP]

Undoubtedly Malc, she will sleep on and off all day now.

 

[Rod]

Roger, Mark hit it on the nail.

Rod

 

[TrimTheKing]

For some reason the British snoring and sleep apnoea page just appeared on my Facebook timeline! This pic tickled me based on this conversation so I thought I’d share...

 

[RogerS]

Funnily enough this Friday I'm being fitted with an ambulatory 24hr blood pressure monitor. Not sure how I'll sleep either as I lie there awake waiting for the next inflation of the cuff.

 

[Phil]

Phil,
I so hope the tests are worthwhile but understand totally your frustration. Hang in there.

Andy, hope so too.

Should be getting my machine coming week. Approved by medical aid and they will pay the supplier direct.
Cost ZAR15k
It is fully automatic.
Senses how I am breathing and either increases or decreases the air flow. It has a humidifier which one needs in this dry climate.
It also has an SD Card and it communicates back to the supplier who can monitor the machine remotely. They can also make adjustments remotely.

On the display I can see the sleeping pattern for the past night.


Cheers

 

[Phil]

Does not effect my wife anymore as we now sleep in separate bedrooms not just for RLS but other medical conditions.
Rod

We also split sleeping years ago due my snoring, thrashing around in the bed, kicking, moaning and groaning.

The last straw was getting up at 04:00 to go to work.

 

[Phil]

For some reason the British snoring and sleep apnoea page just appeared on my Facebook timeline! This pic tickled me based on this conversation so I thought I’d share...

:text-lol: :text-lol: :text-lol: :text-lol: :text-goodpost: :text-goodpost: :text-goodpost:

 

[Phil]

After 6 nights using the machine, I was totally stuffed walking and thinking like a zombie.

The mask either blocked the nose so no breathing or blowing air up into the eyes.
3 or 4 hours of very disturbed sleep.

I also ripped it off twice during one night. Even trying an upright position was no good. At 2AM I was still very much wide awake.

So, stuff it, took it all back to the supplier.
A young lady helped me and the first thing "that is not the right mask for your condition and volume of air required". Great, so the other guy gave me wrong advice.

The new mask is full face over the nose and mouth with a head harness. The 2 nights so far are looking good, only pulled it off once during sleeping.

Cheers

 

[RogerS]

What's the product name of the machine you have, Phil ?

 

[Phil]

What's the product name of the machine you have, Phil ?

Roger, it is a ResMed AirSense 10 Autoset.
Fitted with a humidifier.
Auto adjusts the pressure output as it senses your breathing. Switches on as soon as the mask is fitted.
Has a small display which gives me info on what happened during the night:
Usage hours
Events/Hr - Number of breathing events, apneas and hypopneas, experienced per hour
Mask leak
Pressure
AHI - Average events per hour that you sleep
It also has an SD Card to record info and it looks like a 'sim' card that transmits the info to the local supplier.
The new mask is a Simplus



I set up a new tab on my blood pressure Excel sheet to record the info. This info is sent to the Nephrologist every quarter when I have quarterly blood tests. Next lot is end April which also involves another 24 hour urine test.
I graph the blood pressure and will do the same with the Resmed.

 

[RogerS]

Thx, Phil.