Re: Sleep apnea, PA, edema, asthma, CHF and going crazy fast!

May 20, 2004

Hi Fran,

Sorry. I don't know the answers but I can tell you whenever i am

sleep deprived for too long I get depressed and feel like I'm going

crazy. Usually, the dose of elevil used for fibro is not high enough

to treat depression. -You have a lot to deal with...sorry you are

having a rough time of it.

Feel better,

Marti

-- In , " Fran Mishler " <fran@m...>

wrote:

>

> Dear Group,

>

> I just wanted to let you know I'm going crazy...lol. It sure feels

that way

> right now. This the 2nd night trying to use the new sleep apnea

machine and

> right now I really think it would be easier to just not sleep

anymore.

>

> The sleep study was a cake walk compared to dealing with reality.

I have

> sleep apnea along with a oxygen problem, so I have to use that at

night as

> well. The study also showed I had a pain disorder (big surprise)

that wakes

> me up at night. That can be anything from my face burning from

> erythromelalgia, fibro, PA, RA, to edema and neuropathy in my feet

and legs.

>

> The unit I have is suppose to be the newest one on the market and

last night

> I managed to sleep with it for almost 3 hours. Tonight I'm just

glad we

> don't have guns in the house, or the machine would be the first to

go. I

> also have been so tired and weepy it's been unreal. I'm normally

not a

> crier and rarely lose it. For the past 2-3 weeks I've been crying

over

> everything and nothing. It's just been crazy. (I'm on effexor for

fibro and

> I guess it could not help me depression wise, if this is something

new?) I

> also notice when I read I fall asleep immediately. I usually wake

right up,

> but I really do drop the book. I'm lucky to get a few lines read

and then

> there goes the book..like I said really crazy.

>

> I've been keeping my feet up for 2 weeks trying to keep the edema

under

> control, but you can almost time the water pills by when I start

swelling

> again, and I'm on a max. dose right now. I've been getting cramps

in my feet

> and legs that make you want to jump out of bed, but unfortunately I

can't

> jump. I thought I might be low on Magnesium from the water pills,

so I've

> started back on that supplement.

>

> I lose my though pattern constantly now. I want to write more, but

the

> fatigue is hitting again and I have to stop. Hopefully, the

morning will be

> better and I'll manage to keep the machine on for a few hours at

least.

>

> Well I hope you are all ok. If anyone uses the sleep apnea machine

and has

> some advice on adjusting, please let me know. I know I need to use

it, but

> it's not easy. Take care, Fran going crazy in Florida

May 20, 2004

I read your post about the CPAP machine, and felt compelled to

respond. I have the PA and my husband has the sleep apnea. (When

he went for his sleep study, they had to mask him in the first 15

minutes he fell asleep...it is that bad!)

I just wanted to tell you to keep the faith, and that it DOES take

some time getting used to it. My husband has been using it for

about 4 years now. When he first started using it, we were lucky if

he kept the mask on for an hour. In all honesty, for several weeks,

he could only wear it for one maybe two hours a night. Gradually,

he got used to it. Within six months he was wearing it full time.

He travels periodically for work, and I would argue with him because

he did not want to take it with him. He is VERY stubborn. However,

he felt like crap in the morning because he did not get a good

night's sleep. He has recently asked me to force him to take it on

trips. So, if that means I have to pack it for him, I do.

When you finally wear the mask for a full night, you will definitely

notice a difference.

As for adjusting, I don't know what type of machine you have, but

the only person that can make adjustments is the respitory therapist

by way of instructions from the doctor. His machine has a card with

a microchip.

Just keep trying to wear it as long as you can each night. You will

get used to it. Good luck!

Barb

>

> Dear Group,

>

> I just wanted to let you know I'm going crazy...lol. It sure

feels that way

> right now. This the 2nd night trying to use the new sleep apnea

machine and

> right now I really think it would be easier to just not sleep

anymore.

>

> The sleep study was a cake walk compared to dealing with reality.

I have

> sleep apnea along with a oxygen problem, so I have to use that at

night as

> well. The study also showed I had a pain disorder (big surprise)

that wakes

> me up at night. That can be anything from my face burning from

> erythromelalgia, fibro, PA, RA, to edema and neuropathy in my feet

and legs.

>

> The unit I have is suppose to be the newest one on the market and

last night

> I managed to sleep with it for almost 3 hours. Tonight I'm just

glad we

> don't have guns in the house, or the machine would be the first to

go. I

> also have been so tired and weepy it's been unreal. I'm normally

not a

> crier and rarely lose it. For the past 2-3 weeks I've been crying

over

> everything and nothing. It's just been crazy. (I'm on effexor for

fibro and

> I guess it could not help me depression wise, if this is something

new?) I

> also notice when I read I fall asleep immediately. I usually wake

right up,

> but I really do drop the book. I'm lucky to get a few lines read

and then

> there goes the book..like I said really crazy.

>

> I've been keeping my feet up for 2 weeks trying to keep the edema

under

> control, but you can almost time the water pills by when I start

swelling

> again, and I'm on a max. dose right now. I've been getting cramps

in my feet

> and legs that make you want to jump out of bed, but unfortunately

I can't

> jump. I thought I might be low on Magnesium from the water pills,

so I've

> started back on that supplement.

>

> I lose my though pattern constantly now. I want to write more,

but the

> fatigue is hitting again and I have to stop. Hopefully, the

morning will be

> better and I'll manage to keep the machine on for a few hours at

least.

>

> Well I hope you are all ok. If anyone uses the sleep apnea machine

and has

> some advice on adjusting, please let me know. I know I need to

use it, but

> it's not easy. Take care, Fran going crazy in Florida

May 20, 2004

Fran,

Sorry to hear your having such a rough time of it lately. I do hope

you get more than three hours tonight. We all know how bad it is for

your PA, with no sleep.

Keli

[Editor's Note: Dear Fran, I second Keli's post. Have you tried methadone yet?

(I sent you an off-board e-mail a few weeks back, but hadn't heard in return;

I'm concerned since I've heard from others that they didn't receive posts from

me around that date.) I'm glad to see you've still got a strong spirit; that's

one of the better prognostic indicators. Take care....

D.]

>

> Dear Group,

>

> I just wanted to let you know I'm going crazy...lol. It sure

feels that way

> right now. This the 2nd night trying to use the new sleep apnea

machine and

> right now I really think it would be easier to just not sleep

anymore.

>

> The sleep study was a cake walk compared to dealing with reality.

I have

> sleep apnea along with a oxygen problem, so I have to use that at

night as

> well. The study also showed I had a pain disorder (big surprise)

that wakes

> me up at night. That can be anything from my face burning from

> erythromelalgia, fibro, PA, RA, to edema and neuropathy in my feet

and legs.

>

> The unit I have is suppose to be the newest one on the market and

last night

> I managed to sleep with it for almost 3 hours. Tonight I'm just

glad we

> don't have guns in the house, or the machine would be the first to

go. I

> also have been so tired and weepy it's been unreal. I'm normally

not a

> crier and rarely lose it. For the past 2-3 weeks I've been crying

over

> everything and nothing. It's just been crazy. (I'm on effexor for

fibro and

> I guess it could not help me depression wise, if this is something

new?) I

> also notice when I read I fall asleep immediately. I usually wake

right up,

> but I really do drop the book. I'm lucky to get a few lines read

and then

> there goes the book..like I said really crazy.

>

> I've been keeping my feet up for 2 weeks trying to keep the edema

under

> control, but you can almost time the water pills by when I start

swelling

> again, and I'm on a max. dose right now. I've been getting cramps

in my feet

> and legs that make you want to jump out of bed, but unfortunately

I can't

> jump. I thought I might be low on Magnesium from the water pills,

so I've

> started back on that supplement.

>

> I lose my though pattern constantly now. I want to write more,

but the

> fatigue is hitting again and I have to stop. Hopefully, the

morning will be

> better and I'll manage to keep the machine on for a few hours at

least.

>

> Well I hope you are all ok. If anyone uses the sleep apnea machine

and has

> some advice on adjusting, please let me know. I know I need to

use it, but

> it's not easy. Take care, Fran going crazy in Florida

May 21, 2004

Dear Barb, Dick, , Marti, Cheri, , Keli, , and anyone else

who responded and I forgot from the list,

First of all thanks for your input, I think if you had all said the machine

has been in the trash, or in a closet for months mine would have followed

really quickly. I didn’t sleep with it at all last night and it sounds

strange to stay this, but I just felt too bad to deal with it. I know I

need it since my husband notices such a difference when I sleep with the

machine versus without. But he also doesn’t have to feel like a 747 is

landing inside his nose…lol.

Right now I’m in control of my emotions enough to think logically for once,

and I think I’m having a reaction between my high blood pressure medication

and my water pills. My family doctor just increased (almost a month ago)

the blood pressure pill from 2.5 to 5.0 mg and it can cause all sorts of

problems when mixed with the two water pills I’m on now. (I’m on Altace for

blood pressure, Busmix 4mg for edema and spirolactione at a 100mg. The

problem of course is my family doctor hasn’t returned my call. They were

suppose to call me back on Wednesday, but I still haven’t heard back. I

have two doctor appointments today and then I’ll call him when I get back I

guess.

As far as Effexor making me feel bad, so far it is making me feel bad I

doesn’t realize it. I’ve been on it for probably 4 years and I’ll ask the

doctor about it today.

Sorry for the gang email, but I’d never get so many personal emails written

without passing out. I’m starting to nod off already just on this one.

Falling asleep each time I read is really annoying. Well I just erased a

whole line of the letter kkkkkkkkkk, so I’ve go to end this one now. Thanks

so much for each of you writing me. It means so much to me that so many

people responding to my email. Take care. Love, Fran You are all so

great and I hope someday I can repay you for all the support you give me.

There really is power in numbers.

[Editor's Note: Dear Fran, and I'm going to use " we " here although the others

named are eminently capable of speaking eloquently for themselves, We are happy

to be able to share our thoughts, ideas, our care and concern and love, with

you; as you can see from the many responses, your letters--i.e., their content,

which is, essentially, You--draw us to you. Your spirit is a delight to behold,

and I am sure I'm not the only one to realize that, if we lived nearby, it would

be our pleasure and honor to spend time together in person, and to account you

as A Friend.

D.

[ ] Re: Sleep apnea, PA, edema, asthma, CHF and

going crazy fast!