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Author Topic: To sleep...perchance to dream...  (Read 2662 times)

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Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
To sleep...perchance to dream...
« on: January 31, 2014, 07:11:03 AM »
...ay, there's the rub...

Makes me wonder if Hamlet suffered from OSA?!

Going in for my sleep study this Sunday. See what they find out. Tired of being tired all the time.

Anyway, will post more afterward and about diagnosis and what treatment they're going to suggest. This should be interesting...
Of course it's important. It's an email...

Offline rondrond

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Re: To sleep...perchance to dream...
« Reply #1 on: January 31, 2014, 07:20:28 AM »
If you don't know anyone who has been through a Sleep Study...it won't be anything like you can 'dream' up.. ;D

I liken it going to the Bates Motel...without the knives and blood though...

What prompted the Sleep Study? Have you been experiencing strange dreams when you do manage to fall asleep?

Mine was the same....I'm underwater and struggling to get to the sky you can see through the water above you, yet you just can't seem to get any closer to it and then..

Gasp...I'm awake...

..take your jammies as they will be watching you and well, if you sleep sans clothes...  ;)
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline leatherman

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Re: To sleep...perchance to dream...
« Reply #2 on: January 31, 2014, 08:55:58 PM »
2 friends are doing sleep studies next week, and another one is doing a seizure study the following week. For many people that sleep study finds out about their apena, which is something that can be dealt with and the situation improved. I don't know about this seizure study though. I think they try to initiate a seizure. yowza!

Good luck and sweet dreams  ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
Re: To sleep...perchance to dream...
« Reply #3 on: February 03, 2014, 09:06:48 AM »
Back from the sleep study. I have apnea. Said I probably was having it about every minute. Rolling all over the bed. Didn't reach REM sleep at all. After two hours was put on the CPAP. Had to be on my back. I've never been able to sleep on my back. Said I had uninterrupted REM sleep for 4 hours. Guess I can sleep on my back.

Regardless, feel like sh*t this morning. Called in sick to work. Going to bed and get some none-REM sleep again. Have to talk with insurance company about who will supply my CPAP machine. I felt like one of those unfortunate astronauts in "Alien" after the bug attached itself to their faces.

Will get the final results in about three weeks. See what level I am in severity. Then find out how the docs want to proceed.

Will update again when I learn more...
Of course it's important. It's an email...

Offline rondrond

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Re: To sleep...perchance to dream...
« Reply #4 on: February 03, 2014, 11:13:55 AM »
Well, at least you know.

It seems ridiculous that the doctor that refers you for sleep study does not have the same power to get you a CPAP machine.

I got lucky as I talked about the study at every appointment I had and one day one of the doctors actually went to school with and was friends with the sleep study doctor.

He had a machine that did not have all the bells and whistles but did work and he gave it to her and she gave it to me.

The drawback is those machines have to be monitored and adjusted.

Maybe AFA has a solution to that problem.

I myself felt like Darth Vader.

Good luck on your results.
"I may not be exactly where I want to be, but I sure as Hell am not where I was"
Wynnona Judd

Diagnosed/HIV
1993
AZT
Norvir
1994-2001
Crixivan/Epivir/Zerit
No Meds for 7 Years

04jul07/DVT-right leg/Bi Lateral PE's     
16oct08/DVT-left leg
Sept '09  6 blood clots in left arm
Coumadin 5mgs
                                     
Atenolol/50mg/2x
Hydrochlorth 25mg/1x
Gemfibrozil/300mgs/2X
Symbicort
Proventil Inhaler
Potassium
Rhinocort


*APR 08~Viramune/Truvada
March08  CD4 330 23% VL 452.000 
*Jan09 Med change~Epzicom/Viramune

Aug09   CD4 523 23%  VL<48
Diagnosed: COPD
Dec 2013: CD4 645 45% VL 49
Med Change: Viramune/Epivir/Ziagen/Isentress

Offline leatherman

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Re: To sleep...perchance to dream...
« Reply #5 on: February 03, 2014, 12:33:10 PM »
CPAP machine. I felt like one of those unfortunate astronauts in "Alien" after the bug attached itself to their faces.
ROFLMAO

Regardless, feel like sh*t this morning. Called in sick to work. Going to bed and get some none-REM sleep again.
hope you feel a lot better soon!

maybe, like with hiv meds that eventually make you better, maybe it'll take a few nights of real sleep before your system will adjust and you'll feel better.  ;D Wonder what the package insert for a CPAP machine says about side effects? ROFLMAO
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline Theyer

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  • Current ambition. Walk the Dog .
Re: To sleep...perchance to dream...
« Reply #6 on: February 03, 2014, 03:27:47 PM »
Are you relieved to have found out?
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Miss Philicia

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Re: To sleep...perchance to dream...
« Reply #7 on: February 03, 2014, 05:25:21 PM »
Just fyi, for some patients there is now an alternative to a CPAP machine

http://www.aadsm.org/oralappliances.aspx

fyi, after my sleep study in 2012 my pulmonary specialist referred me first to an ENT specialist and I had nasal surgery (septoplasty and turbonectomy) to correct a deviated septum, after that my next sleep study showed my apnea had disappeared. I don't actually believe it myself as I know I wake myself up from time to time and my family says my snoring is atrocious just falling asleep in front of a television. I kind of wonder if I need to go back and have another study done. I would much prefer an oral device to a claustrophobic CPAP. But then I had a panic attack during one of my sleep studies just from being wired up and ran out of the hospital mid-way through the study, then had to go back for another one the next week using xanax to keep me calm. Mess!

I first had sleep studies done back in 2001 and a that time after they went through an entire separate CPAP fitting, which is an overnight routine too, my fabulous private insurance denied it as I didn't have moderate to severe levels of apnea at that time. So I went another decade with bad sleep, fatigue and what not which I'm sure contributed to developing hypertension by the age of 40.

Anyway, good luck whatever your outcome. IMO more people would benefit from sleep studies, not to mention there are more sleep disturbances that can be diagnosed than just apnea.
"Iíve slept with enough men to know that Iím not gay"

Offline weasel

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Re: To sleep...perchance to dream...
« Reply #8 on: February 03, 2014, 08:53:45 PM »

    I do not sleep well . I feel like shit most of the time .

   My left nostril  does not function well .

    Should I consider  an operation or a sleep study .

    If i get much worse I will be a zombie  :'(

     Do the doctors let you take Sleeping pills in the sleep study ?    I do not sleep three hours with out a pill or two .

    I'm as nervous as a Clam at low tide  :(

                                                 Weasel   
" Live and let Live "

Offline Theyer

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Re: To sleep...perchance to dream...
« Reply #9 on: February 04, 2014, 06:48:31 AM »
Hey dear Weasel I think you deserve your own thread here , tell us all whats happening and see what comes out off that take care good man
Michael
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline LongTimeSurvivor

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  • Posts: 195
  • I don'no...there may be Zombears...in theres...
Re: To sleep...perchance to dream...
« Reply #10 on: February 05, 2014, 12:09:14 AM »
    I do not sleep well . I feel like shit most of the time .


Get a sleep study. After the sleep study is when you find out what options might be available depending on the severity of the apnea, if that's what you have.

    My left nostril  does not function well .


Probably need to make an appointment with an Ear/Nose/Throat doctor. See what the doc has to say and go from there.

    Should I consider  an operation or a sleep study .

    If i get much worse I will be a zombie  :'(
 

As mentioned above, sleep study first, solutions upon determination of the problem and its severity. That can range from using CPAP to having a Maxillomandibular advancement...which is major surgery but has a high rate of success.

    Do the doctors let you take Sleeping pills in the sleep study ?    I do not sleep three hours with out a pill or two .


Probably depends on where you have the sleep study done. Some places want you to keep the same routine you use to sleep. Others want you to be clean as a whistle. When you go in for a consult just ask. They'll let you know what you can and can't do.

    I'm as nervous as a Clam at low tide  :(


Never knew clams were nervous. But, hey, learn something new every day!

A sleep study is really nothing to get nervous about. You get the wires hooked up to your head, face, chest, and legs. If something pops off during the night, the tech comes in and re-attaches it. I found it all interesting but then I was making jokes in the operating room when they zapped me a few years ago. Medical stuff for some reason, except for blood draws, doesn't particularly faze me anymore.

If you think you have apnea then get a sleep study done. That way you'll know one way or another.

Hope you feel less nervous now Weasel...
Of course it's important. It's an email...

Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
Re: To sleep...perchance to dream...
« Reply #11 on: February 12, 2014, 08:02:07 PM »
Got the initial report on my sleep study. It's official. I have OSA!!! Yay, for the team!!!

Should receive the final written report next week. In the meantime they're making arrangements for me to get a CPAP machine. It will be delivered to my apartment where I'll be shown how to operate the dam..rn thing. Have to go into overdrive to get the apartment into presentable shape before the sleep tech comes over.

Basically the doc said I had 61.31 events per hour, never achieving REM sleep. I also had several severe oxygen desaturation episodes during each hour. He didn't say how severe though or for how long. Guess I'll find that out with the report.

Not sure how much I care about getting the CPAP. To me that's like taking an aspirin for a brain aneurysm. Doesn't take care of the problem, just covers it up. Really looking at having a combined UPPP, genioglossus advancement, and maxillary-mandibular advancement done. The success rate is in the high 90's. And if it fails, well the insurance company will have paid for me to get a nicer chin.

I see my internist next Monday and will go over this with him. When the report comes in I'll be sending that off to the surgeon who did my sliding genioplasty. He's an expert in this field. He heads up Mt. Sinai Hospital's department dealing with reconstructive work on patients who have had face trauma from accidents as well as patients who are born with the problems. A lot of the techniques other doctors use were developed by him so I think he should know how to do the surgeries. Plus, he's a really great guy...

That's about it for now...will update if there's something to tell...
Of course it's important. It's an email...

Offline Theyer

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Re: To sleep...perchance to dream...
« Reply #12 on: February 13, 2014, 05:46:42 PM »
Thanks for the up date and congrats for sounding so calm at what you are persuing , I am afraid I shudder at the thought off all that surgery and would welcome the machine to avoid it, but I see your reasoning.

Atripa wiped out my REM sleep and I felt fanastic when I came off it.
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline Mishma

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Re: To sleep...perchance to dream...
« Reply #13 on: February 18, 2014, 02:21:20 PM »
An alternative to the CPAP is O2 via a nasal cannula with a long, long line to the O2 machine-as they all make, in MHO, too much noise.

A decade ago when I was packing on an additional 60 pounds thanks to predisone, I was diagnosed with sleep apnea and tried out the CPAP. I lasted a week. Not only did the noise drive me crazy but I felt intense claustrophobia with the mask on. It reminded me of my earliest childhood experience/trauma; having my tonsils yanked out after suffocating me with a mixture of chloroform and diethyl ether.

Although more expensive the VA put me on O2 which I used until I got off the steroids and lost weight. I haven't used either since.
2016 CD4 25% UD (less than 20). 27+ years positive. Isentress, Truvada, Acyclovir, Clonazepam, Zolpidem, Bupropion, Lisinopril, Pravastatin, Quetiapine, Doxcycline, Testosterone, Suatriptan/Naproxen, Restasis, Dorzolamide, Latanoprost, Asprin, lortab, Levothyroxine, Fioricet, Restasis, Triamclinolone, Nitrostat.

Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
Re: To sleep...perchance to dream...
« Reply #14 on: February 19, 2014, 09:18:21 PM »
Seem to have entered a moment in time where things stand still. The insurance company has to decide about what treatment they'll cover for my OSA. It's like an episode of Star Trek. Everyone around you is motionless or seems so...and you're the only one who seems to be normal.

Plus I lost my mailbox key so can't access it till I get it replaced...arrgh!!!

On the positive side, went in to get blood results this past President's Day. Everything perfect...not kidding...I read like a text book when it comes to my blood work. A few things are different but they tend to be better then good. Like my cholesterol is 110. So guess I should hold off on grousing about the insurance company for a bit. One has to have patience when dealing with little minds. And since my insurance company is based in Texas...there are a lot of little minds, especially in the higher ranks. Lower ranks, on the other hand, seem to be stone-cold sober. They pitied me living in New York but having insurance from Texas.

Anyway...for now...nothing to report on the apnea front.
Of course it's important. It's an email...

Offline LongTimeSurvivor

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Re: To sleep...perchance to dream...
« Reply #15 on: March 02, 2014, 11:53:23 AM »
Got the CPAP machine Saturday, March 1st. The tech explained everything to me very thoroughly. Main thing I remember is don't let water get into this part...it will blow up. Thank god I remember the important things, now where's the on switch?

So first time was last night seeing how I well I could sleep with this thing attached to my face. The tech set it to ramp up in pressure over 20 minutes since the doctor wants me to start at the 14 setting with 20 being tops for a pressure setting. I think I lasted 3 hours with maybe 2 of those asleep. So will try again tonight. The machine doesn't make a sound. What I hear is air leaking out around my mask. Which shouldn't be a problem once I get home after kitty sitting for a week. I run my a/c at night. NYC may be in a cold spell but my steam heated apartment lives on the equator.

The sleep doc wants to see me in two months. So, come hell or high water, I'm going to try to use this machine every night. See if I can handle it. Rather just have the operation but guess I have to go step by step. Who knows, maybe this will work out just fine. As long as I can get sleep I don't care.

That's it for now. Any questions just ask.
Of course it's important. It's an email...

Offline leatherman

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Re: To sleep...perchance to dream...
« Reply #16 on: March 02, 2014, 05:15:47 PM »
but my steam heated apartment lives on the equator.
my first partner and I lived about 1/4 mile off of Lake Erie in Cleveland, and parts of the winter I was very happy for that steam heat; but there were a lot of times, we were running around in shorts with the fans on. LOL

So, come hell or high water, I'm going to try to use this machine every night. See if I can handle it. Rather just have the operation but guess I have to go step by step. Who knows, maybe this will work out just fine. As long as I can get sleep I don't care.
Its like physical therapy, exercise, or getting used to a new med, there are problems and there are adjustments. it's not a miracle cure; but a process leading to better health. Follow the plan and give it some time. ;)
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline leatherman

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Re: To sleep...perchance to dream...
« Reply #17 on: March 02, 2014, 06:58:51 PM »
Hey! Happy Birthday!! ;D
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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Re: To sleep...perchance to dream...
« Reply #18 on: March 04, 2014, 07:46:59 PM »
Why...thank you...Mr. Leatherman!
Of course it's important. It's an email...

Offline leatherman

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Re: To sleep...perchance to dream...
« Reply #19 on: March 04, 2014, 08:43:17 PM »
we're fellow pisces ;) is that the white house behind you?  ???

I would ask how it was going with the cpap machine; but it's just been, what, 2 nights or something. LOL
leatherman (aka mIkIE)


chart from 1992-2013; updated 2/09/13  Reyataz/Norvir/Truvada

Offline LongTimeSurvivor

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  • I don'no...there may be Zombears...in theres...
Re: To sleep...perchance to dream...
« Reply #20 on: March 05, 2014, 09:49:04 PM »
Yes, it's the White House. Was on tour with my parents and Aunty from England two summers ago. They had been to Buckingham Palace and wanted to check out our little country house.

So far being on the CPAP machine is like being punched in the nose by a very hard fist...after about three hours. Have to remove it for a bit and make sure I don't touch my nose because it's just painful if I do. Not sure why I'm having that reaction but I am.

The mask I've started with is just for the nose. I've already ordered a mask that will cover my nose and mouth to see if that will take care of the pain problem. Maybe it'll just make my mouth and nose both feel like they've been punched.

But I've promised myself, come hell or high water, I'm giving the machine a chance. Still feel tired but nothing like before. So that part seems to be improving. Just have to hope I'm getting REM sleep.
Of course it's important. It's an email...

 


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