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Author Topic: What else could happen?????  (Read 5843 times)

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Offline ubotts

  • Member
  • Posts: 347
What else could happen?????
« on: April 29, 2008, 01:18:36 PM »
I was feeling ill and very weak..so they changed my meds..
My tcells were 161 and then they shot up to 338, but I have always been VL undetectable, until now...but they say they will fix that..
OK..they have to rethink my cocktail...

Now I just found out yesterday that I have sleep apnea...The Dr said, that's why I am always tired and weak..

So now I have to wear a mask with oxygen to bed at night...The mask goes over your head and a small cup goes over your nose and mouth..
                    (sigh) :(
Ill do what I have to do to feel stronger, so I have to get used to this mask wheather
I like it or not..

Has anyone else had this experience???
I hope I am not alone is this.

I would love to hear from anyone who has dealt with this experience, so please feel free to post..It would help me alot to hear other stories..
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline redhotmuslbear

  • Member
  • Posts: 605
  • A genuine certified freak of nature, and a hot one
Re: What else could happen?????
« Reply #1 on: April 29, 2008, 02:05:18 PM »
UB,
I went through sleep apnea Dx and the adjustment to a nocturnal CPAP machine with my ex in 1995.  It's simply something you're going to which you will need to adjust, just like the many times i've had bandages on my head and needed to learn to sleep in different positions while also experiencing incisiional pain.  My top suggestion would be that you listen carefully to the machine noise and find rhythms in it on which you can focus and meditate to sleep--that's also very helpful for the bed partner of anyone using nocturnal gear for sleep apnea.

As for adopting new meds, just be super-vigilant against being put on anything with AZT.  Slleep apnea severely diminishes the oxygenation of your blood, and AZT does the same thing.  Hence, while your alertness and wakefulness may improve the gear, AZT could leave you just as wiped out and challenge the doctors with sorting out what's causing what.

Namaste,
David
"The real problem is not whether machines think but whether men do." - BF Skinner
12-31-09   222wks VL  2430 CD4 690 (37%)
09-30-09   208wks VL  2050  CD4 925 (42%)
06-25-08   143wks VL  1359  CD4 668 (32%)  CD8 885
02-11-08   123wks off meds:  VL 1364 CD4 892(40%/0.99 ratio)
10-19-07   112wks off meds:   VL 292  CD4 857(37%/0.85 ratio)

One copy of delta-32 for f*****d up CCR5 receptors, and an HLA B44+ allele for "CD8-mediated immunity"... beteer than winning Powerball, almost!

Offline ubotts

  • Member
  • Posts: 347
Re: What else could happen?????
« Reply #2 on: April 30, 2008, 08:46:07 AM »
 Thank you for helping me out here, but I am not sure what you mean when you say, listen for the rhyme thing while I am on the oxygen mask? ???
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline hartiepie

  • Member
  • Posts: 94
Re: What else could happen?????
« Reply #3 on: April 30, 2008, 09:01:00 AM »
My ex used a CPAP and it was like sleeping next to Darth Vader.......

No matter though as I got to like it because it meant good things for him and he felt much better.

My best friend also uses one and the benefits far outweigh getting used to it.

Offline netta

  • Member
  • Posts: 396
Re: What else could happen?????
« Reply #4 on: April 30, 2008, 11:53:36 AM »
Sorry to hear about your troubles, how do they diagnose sleep apnea!!!!
As far as changing your cocktails, this has happen to me many times, When my meds stop working they find a new cocktail. My T cells have never gone past 300, My viral load has gone up and down many times also. Right now I am undetectable which is a blessing. i know it can be a drag changing meds ,but try not to worry, do what you have to, I am praying for you.
"to thine own self be true"

Offline OneMoreGuy

  • Member
  • Posts: 77
Re: What else could happen?????
« Reply #5 on: April 30, 2008, 12:13:50 PM »
To answer your question Netta: 'how do they diagnose sleep apnea?' follow this link:

http://sleepdisorders.about.com/od/diagnosingapnea/a/bedbugg.htm

When my doctor thought I might have sleep apnea back in the mid 90s when I found out I had high blood pressure, I had to spend a night at a sleep center with (said in non-technical jargon) a bunch of wires attached to several parts of my naked torso and head. For me it was determined that I had a minor case of sleep apnea which did not require the oxygen tank use at night as it could be fixed with a laser operation of my throat (I never had the operation done).

To this day, I am okay as long as I take my high blood pressure medication, but at the time, I did dread the thought of having to sleep with an oxygen mask attached to my face for the rest of my life. So I definitely empathize with ubotts.
Psychologist, PhD
Counseling patients with HIV since Jan 1991
HIV since Dec 2005
There are three parts to any successful relationship (platonic or romantic): trust, honesty and communication

Offline ubotts

  • Member
  • Posts: 347
Re: What else could happen?????
« Reply #6 on: April 30, 2008, 09:04:32 PM »
Thank you all for your knowledge about this disorder..

If I have to sleep with a bucket over my head to get a better nights sleep, I will.
My honi, will just have to deal with Darth Vader..

My honi is dealing with me snoring and coughing so loud, I dont think this will be worse for us both...

I look like a raccoon.... I am waiting on the date. I have the prescription ready, now I have to get the call from the Dr's, telling me where to go and what time..

I also have high blood pressure, dont know if it has to do with sleep apnea or not, and I also have acid reflux..

Last night was the worse...I was lying in bed, went into a bit of a catnap, then all of a sudden, I felt the acid burning in my stomach. :'(

So I went to the bathroom and puked my brains out...My honi thought I was taking a shower, that's how bad it was...Then when I looked in the mirror I had blood running down my nose, my chin, and my neck.. :o I was scared shitless..

When I woke up after trying to sleep, I just dont have any energy. I really am short on oxygen when I am sleeping...

So put a big old bucket on my head and I will get used to it no matter what..
Like I said before, a girls gotta do what a girls gotta do.. ;)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,093
Re: What else could happen?????
« Reply #7 on: April 30, 2008, 10:15:04 PM »
Take care of yourself, lady.
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: What else could happen?????
« Reply #8 on: April 30, 2008, 11:44:32 PM »
Sorry read about all your troubles.  My brother-in-law has to use one of those masks to sleep with and he didn't take very long to get used to it.  I hope you get some good sleep soon.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Offline rondrond

  • Member
  • Posts: 1,712
Re: What else could happen?????
« Reply #9 on: May 01, 2008, 12:27:09 AM »
My sister sleeps with an oxygen mask on. She has sleep apnea. After her first night with the mask, she felt very refreshed having slept the entire night, which she had not been able to do for years.
"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 ubotts

  • Member
  • Posts: 347
Re: What else could happen?????
« Reply #10 on: May 02, 2008, 10:16:28 PM »
I go for my mask this week..I hope I do as good as your sister did..
I need to sleep.
You heal while your sleeping and I haven't slept good in a long time..
Glad they referred me to the sleep study test.

I am taking Trazadone 200 mgs. Klonopin 3 mgs and Lunesta, but it still doesnt put my ass to sleep..........

Now maybe I wont need this pills..I am hoping....I have hep c and this pills I take say if you have a liver problem you shouldnt be taking these pills...Even my cocktails say the same thing..

I just want to sleep well, and knock out the pills I can....But gotta stay on my cocktails no matter what....
Wish me luck.....
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline rondrond

  • Member
  • Posts: 1,712
Re: What else could happen?????
« Reply #11 on: May 02, 2008, 10:43:51 PM »
Thank you for helping me out here, but I am not sure what you mean when you say, listen for the rhyme thing while I am on the oxygen mask? ???

When you turn on the machine it is going to ..beeep..and then it is going to start 'cycling'. After awhile you are going to start noticing a certain rythm as it does it thing ...supplying you with oxygen. My sister not only looks like Darth Vader, but sounds like Darth Vader as the noise it makes is an exact match to the movie.
"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 courage757

  • Member
  • Posts: 22
Re: What else could happen?????
« Reply #12 on: May 03, 2008, 05:09:29 PM »
Your definitely not alone.  In my case, I can't fall asleep.  Have you tried Atripla for the HIV? My T-count is around 400 Currently, I am not taking anything for my HCV.  I am hoping something new comes out.  My Hep C doctor will not put me back on Infergen.  The side effects are awful.

Keep strong. 

Courage757

Offline ubotts

  • Member
  • Posts: 347
Re: What else could happen?????
« Reply #13 on: May 07, 2008, 11:47:42 AM »
No I am not taking anything for hep c..
I cant believe I have to go all over again and do the sleep apnea test again..
I was so bad Monday I had to go right to my Dr's and they put me back on Predisone
and gave me some tussinex cough medicine..

I could not breathe, and that is so scary...I feeling I wouldn't want to happend to my worse enemy...
The predisone has help me out a bit...today is my last day of using it...thank god..
It cause me to shake uncontrollable...
I was put on Monday 20 mg in the morning and 20Mg's at night for 3 days, and tonight will be my last dose....
The cough medicine is really working...tussinex has some kind of narcotic in it. :) whatever it is it works great...
Being an ex drug user, I have to be careful of not downing half the bottle...
Then it would feel like a herion high....

I am older and wiser, so I take a teaspoon once during the day and once at night..

But at times, I want to down the whole freggin bottle....

Anyway,,I have to redo the sleep apnea test again...

First she said I have nothing open until July 20...I replied you have to be kidding me...I told her what had happened on Monday, and told her I am on predisone...so dontcha know she found a spot on May 14 real quick..geesh..there so full of shit...
You have to be almost dying to get the treatment you need here... :( sad but true..



And as far as me starting hep c treatments...My doctor said I will be sick 3 days of the week for 18 months,....

I cant handle how I feel now, so I said no way...She said that my opinion to do so..She agreed that it would be too much for me now....I already knew that when they first wanted to start hep c treatments...

Anyway please wish my luck and throw in a few prayers to give me a boost. :)
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline BT65

  • Global Moderator
  • Member
  • Posts: 10,093
Re: What else could happen?????
« Reply #14 on: May 07, 2008, 12:07:49 PM »
Wow, good luck with all that Ubotts.  Do you know they give Methadone for Tussinex addiction? (at least they used to).
I've never killed anyone, but I frequently get satisfaction reading the obituary notices.-Clarence Darrow

Offline ubotts

  • Member
  • Posts: 347
Re: What else could happen?????
« Reply #15 on: May 08, 2008, 03:30:19 AM »
Wow, good luck with all that Ubotts.  Do you know they give Methadone for Tussinex addiction? (at least they used to).

Wow..now thats news to me.. I was on Methadone for 10 yrs..When I wanted to get off the program said I was not ready...Hell yes I was readly after 10 friggin year...My highest dose was 60, but i was working then and I felt over medicated...So I stay on 40mgs most of my ten years...My ex was on 100 mgs...

Knowing the way they treat you, I said to myself..
Seft You better stay on a low dose, because they can just kick you out of the program in a New York minute....

I have seen my friends suffer so badly when they got thrown off, just like that..To me it felt
like a concentracion camp....Yes the Nazi were running it...
I was tired of peeing in a bottle once a week for 10 yrs...
I didnt want to be a slave to the methadone or to the worker, because they felt they had you in the palm of there hand...and would threating people that if they didnt do this or that they would get kick out...

These methadone places, dont want you to leave, its more money in there pockets, so when you want to detox and they say you arent ready...Its all about the old might dollar.
If they cared like they should of, they would have said, ok I will help you detox..

I was hit by a car while crossing a busy nyc street, and while I was in the hospital, they did a blind detox.....I had no idea until the day I got out from the hospital and had to go back to the program, I just handed over the papers...I had no idea that they cut me 20 mgs..

My program wanted to up me to 40mgs ....Thats when I said I am ready to get of this crap,
and thats when they said your not ready....

So i winded going home that day with 2 weeks of methadone due to my car accident I didnt have to go every day, thank god..

I only had to go the first time so they could see what shaped i was in, and my aunt n uncle drove me to the program that day, because I couldnt walk....seeing is believing because from then on, my aunt would pick up my methadone...So now I am home with 2 weeks of meth and i decided to cut myself down from 40 to 30 then 20, then 10...
My mistake was that I didnt drink the whole bottle of meth, cuz I was trying to decrease myself...

When my aunt had to bring the bottles back, the nurse opened the brown paper bad and noticed there was meth left in each bottle..

So when they called me up about that,,I said my mom was giving me meth in a dixie cup,so I
had no idea of what I was taking..Yes I lied...but when I went back
Verbally I ripped them a new asshole, now I could do that because I told them I am outta here, all you will see are  the soles of my feet and my asshole running out of here like a bat outta hell....since then I have never done methadone..

Betty to hear that they use methadone to treat tussinex addict is all new to me..
But the shit works and I am coughing less, so I guess that a plus..

Oops, I better get off my soapbox, once again, I went on an on....forgive me  :-[ Please!
Live Love Laugh and dance like no ones watching.
Laughter is the best medicine, so try to have a laugh everyday..Even if your not feeling your best, think about something that was funny at one time in your life and work with it..   :o)

Offline AndyArrow

  • Member
  • Posts: 1,196
Re: What else could happen?????
« Reply #16 on: May 09, 2008, 01:16:46 AM »
I just wanted to sent you continued good wishes.

AA
It is not the arrival that matters.  It is the journey along the way. -- Michel Montaigne

Online Jeff G

  • Administrator
  • Member
  • Posts: 13,245
  • How am I doing Beren ?
Re: What else could happen?????
« Reply #17 on: May 09, 2008, 09:54:26 AM »
I was taking methadone four times a day and morphine also .
A little over a year ago I decided to stop taking it . I went cold turkey at home and it was horrible . It was so bad it made me even more determind to tough it out .
I did not want to ever have to go through that again and wanted it behind me.
It took a month to even start to feel better and sleep again .   

Offline Bob Mac

  • Member
  • Posts: 8
Re: What else could happen?????
« Reply #18 on: May 09, 2008, 10:08:39 AM »
UB, i wish you well!  this stuff never ends, does it?
well, here's hoping that your treatment works, and you get to sleep!
bob mac

 


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