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Somanyyears had a seizure

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DragnHeart posted 8/13/2019 11:35 AM

Hopefully the new mask and settings will help him. Why won't he take any tylenol?

Sending continued mojo and prayers.

looking forward posted 8/13/2019 12:35 PM

Because he doesn't like to take any pills!

Frustrating! He's snoozing now.

Thank you for the continued mojo and prayers,DH.

sisoon posted 8/13/2019 16:17 PM

I missed the latest updates. I'm glad CPAP may work for smy. You can tell him I say to take the damned pills ... though I prefer ibuprofen to tylenol. Pain slows down healing.

Also tell him I know this period sucks, but if he takes care of himself - no more violating sensible instructions - the period will end sooner than if he continues to rebel.

looking forward posted 8/13/2019 16:29 PM

Hi sisoon,
I'll certainly let smy know!
He may come on later....he couldn't remember his password and neither could I......I woke up this morning, sat up in bed, and said the password out he'll be back soon!

Aging gracelessly these days.....(sigh)

[This message edited by looking forward at 4:31 PM, August 13th (Tuesday)]

thebighurt posted 8/13/2019 16:57 PM

Hi, I hope the new mask/setting is acceptable and, most of all, gets used! Sometimes a patient with a shoulder injury sleeps better in a recliner....

I can relate to the pill thing. I didn't take the Aleve the doc told me I needed for my injury - for pain - until he told me at follow-up it was also an anti-inflammatory and would hasten my healing because of that (but only if I took it!!). Maybe smy needs to hear the "rest of the story"?

I believe pain, to a point, is a good thing because it tells us what is going on. A change in it signals whether something is working.

I hope you both start getting good sleep. That can be half of the battle.

hopefull77 posted 8/13/2019 23:55 PM

It's best to keep "ahead of the pain"!
Take the Tylenol!
Thanks for the update!! I appreciate you taking the time to check in!

somanyyears posted 8/14/2019 11:42 AM

.."A BIG HELLO" to everyone , and THANK YOU for all the caring thoughts and well-wishes during this stressful ordeal.

Having no memory of the seizures and how I managed to fracture my left arm leaves me in "The Twilight Zone"...

...and, since when do I have to remind myself to 'breathe' while I'm sleeping??? add all this C-PAP mask crap and hoses and all the nonsense with it. You can't even talk while you're wearing it... it sucks, completely!!!

This is going to take a whole lot of getting used to I think...

Turning my life upside-down...GRRRRRRRRR

Thanks SI Peeps.. you're the best.


DragnHeart posted 8/14/2019 12:08 PM

Hi smy!

I know this all sucks but gove it a try and make sure to take something for the pain. Rest and let your body heal!

Glad to see you stop in.

Continued prayers and mojo for you!

thebighurt posted 8/14/2019 19:16 PM

now add all this C-PAP mask crap and hoses and all the nonsense with it. You can't even talk while you're wearing it..
It's for use when you sleep.... so you talk in your sleep? (sorry... )

looking forward posted 8/14/2019 20:54 PM

@the bighurt:
That's when I can scold him and he can't reply!

In all seriousness...he knows the importance of the CPAP...hope he lasts longer with it tonight! It's a challenge for him to get used to it and I told him tonight: "You are not a quitter!"

[This message edited by looking forward at 8:59 PM, August 14th (Wednesday)]

WhatsRight posted 8/15/2019 23:26 PM

Please take care of yourself. PLEASE

It totally sucks to get definitely isn't for "sissies"! (I am right behind you!)

I know its not easy, but please tolerate the unplesantries when they arise, so that you can feel the best possible.

We are all thinking of you.

hopefull77 posted 8/16/2019 06:38 AM

Thanks for the update SMY ! I know the machine is a PIA but the folks I know who HAVE to use them say once they got used to it they noticed a huge change in their quality of life! Sleep is so important!
Hang in there!

WhatsRight posted 8/18/2019 20:12 PM

How are things???

looking forward posted 8/19/2019 05:41 AM

@WhatsRight & fellow SIers:
I read your update request at 4:15 this morning. It's now 6:30 am. As you can infer, I am sleepless where a river runs through it, constantly listening for smy's breathing.
smy has tried using the CPAP a few nights this past week, lasting about 30 minutes. He says it is suffocating.
He removes his sling (fractured humerus)at night and I am worried that he will turn abruptly, go into a seizure, etc.
He is also in pain with his arm and he is extremely reluctant to take any meds. We both fear that there is more going on with his arm, so when we see the family doctor tomorrow we will request full arm, top to bottom, x-rays.
He has his MRI on Friday for his brain; I don't know if our doc can add to the requisition for a shoulder scan at the same time. He exhibits some signs of shoulder damage (torn rotator cuff?? which I've had 3 times with 3 surgeries). Of course, frozen shoulder is a possibility if he doesn't start gentle physio soon.
He told me one night to sleep in the other room if I can't sleep due to his severe obstructive sleep apnea.
So...I've had my morning tea and now am drinking coffee, going upstairs occasionally to check on his breathing.

minusone posted 8/19/2019 06:42 AM

What a nightmare. (((LF))). (((SMY))). At the very least, he is a very difficult patient. Itís scary, I know.....

He needs to take the meds to deal with the pain.

Tell him he is testing the patience of his SI friends and needs to put on his big boy pants or hockey pads and take the damn pills and use the CPAP.

And then tell him our prayers, mojo and good vibes are never ending.

Hang in there LF.

DragnHeart posted 8/19/2019 09:02 AM

Oh looking forward, you must be totally exhausted. Yes Smy needs to take something for the pain and he needs to maybe go for a sleep test where they can monitor the machine, maybe make adjustments so it works for him instead of feeling like he's suffocating.

I hope your doctor's appointments some way. This isn't good for either of you.

Hugs and prayers coming your way

looking forward posted 8/19/2019 10:33 AM


he needs to maybe go for a sleep test where they can monitor the machine, maybe make adjustments so it works for him instead of feeling like he's suffocating

He is already on the lowest possible setting at 4 with the soft start, and the machine has been set to only rise to 5 maximum (out of 15). He is monitored remotely by the CPAP rep. Apparently, there is an adjustment period, but up to 40% of patients never adapt.
I actually got a pain pill in him this morning!

DragnHeart posted 8/19/2019 10:35 AM

Sorry I'm not totally familiar with this machine. Does it force air into him? If it's set low wouldn't that make.him feel like he's not getting enough air? Shouldn't it be set higher?

Ugh so frustrating. For both if you I imagine. I'm glad you got some pain Meds into him. He will rest easier without such pain.

looking forward posted 8/19/2019 11:57 AM

CPAP works by blowing air into the throat via a mask, subtly increasing air pressure in the throat and preventing the airway from narrowing.

No, Dragnheart. He feels it's too much pressure. The airway has to be kept open during sleep to prevent apnea. He stops breathing up to 45 times an hour, according to the overnight sleep apnea clinic he did back in late June. Plus, he hates the mask (and he has tried several different kinds).
P.S. OHIP covers 75% of the cost. He has 4 months to decide. Cost is not the point; thought you'd want to know as a fellow Ontarian.

Marriagesucks posted 8/19/2019 12:17 PM

He says it is suffocating.
That and claustrophobia are the two most common complaints. Furthermore studies into the effectiveness of therapy is strongly lacking. A percentage of people NEVER use the prescribed machine after the sleep study.

I had my first sleep study many years ago. I was on CPAP all night. When the technician was finished with me he had the audacity to ask me how I slept. My answer: Not a wink. I hadn't in my life stayed awake so long without the benefit of strong coffee.

A couple of days later I was prescribed a bipap with no sleep study whatsoever for testing.

Years later that machine died and I needed a new one and couldn't get the prescription without a new sleep study. Yet another night of no sleep til the last hour when the technician switched it from cpap to bipap (in other words nothing had changed).

Some people can't get used to a cpap at all (the equivalent of duct taping a leaf blower to your mouth and nose with no exhaust to release the air once inhaled.

Here in the States most insurance and medicare won't pay for a machine unless you have a minimum of four hours sleep per night... due to a high percentage of abandonment.

The privacy issues with this alone would be another topic for discussion altogether.

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