Re: Re: IPF and inability to sleep

[Guest guest]

Joyce, Ask for Lunesta, it works for about 10m days..stops and

if you "take a drug holiday" from the Lunesta for 2 days it works again.

I don't know why it does this but it's just about the only way I sleep.

My pulmonologist has also given me prescriptions for valium 2mg and/ or

atavan.5mg to help with the anxiety of no sleeping! Once in a while

I'll take one of them along with the Lunesta and they do well.

Z. fibriotic NSIP/05

"I'm gonna be iron like th lion in Zion" Bob

Marley

wrote:

Joyce, My doctor told me there are two kinds of Ambien: One helps

you

go to sleep, the other is for people who fall asleep but can't stay

asleep. He gave me the stuff to keep me asleep. Guess what? It does

nothing, especially if I now can't go to sleep to begin with! Ask

your doctor for the other ambien, the one I had, which...doesn't

work

either. I had an "awful" night the other night, after taking too many

drugs at the same time, I guess. I desperately wanted sleep; hadn't

slept in four nights. I dreamed I was running, running, running,

couldn't stop running, running. I woke up gasping for breath, soaking

wet.

So don't self-medicate! I thought I'd try taking a couple of benadryl

with other stuff. Don't do it! I did sleep, but, oh, that running

dream. Jeez! I was exhausted.

> >

> > I am a 58-year old woman. I was diagnosed with ipf in 12/04.

I have

> > been doing very well. In fact, at this time, I no longer use

> > supplementary oxygen. But I have a question. I can't seem to

sleep.

> > Sometimes I'm up all night and nothing my doctor has given me

has

> > seemed to help. I just can't sleep. I'm tired sometimes, but

it

> > almost seems like I'm running on some other kind of energy.

I'm

> > concerned because the human body needs rest.

> >

> > Any comments??

> >

> > Thanks.

> > nlassiter1000

> >

>

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-- I'm gonna be iron like a lion in Zion. * Bob Marley

[Guest guest]

Well, I took 10 mgs of ambien last night per Peggy's advice. It was wonderful. I slept all night. Woke up a little groggy, though. I'm going to try 7.5 mgs and see how that works. I know there are two ambiens - 1 is a controlled release type and the other isn't. I don't take the controlled release type. I would also like Carolyn's opinion on Traxodone. I don't particularly like what I read about it. Leanne uip 1/03 wrote: Joyce, My doctor told me there are two kinds of Ambien: One helps yougo to sleep, the other is for people who fall asleep but can't stayasleep. He gave me the stuff to keep me asleep. Guess what? It doesnothing, especially if I now can't go to sleep to begin with! Askyour doctor for the other ambien, the one I had, which...doesn't workeither. I had an "awful" night the other night, after taking too manydrugs at the same time, I guess. I desperately wanted sleep; hadn'tslept in four nights. I dreamed I was running, running, running,couldn't stop running, running. I woke up gasping for breath, soakingwet. So don't self-medicate! I thought I'd try taking a couple of benadrylwith other stuff. Don't do it! I did sleep, but, oh, that runningdream. Jeez! I was exhausted.> >> > I am a 58-year old woman. I was diagnosed with ipf in 12/04. I have> > been doing very well. In fact, at this time, I no longer use> > supplementary oxygen. But I have a question. I can't seem to sleep.> > Sometimes I'm up all night and nothing my doctor has given me has> > seemed to help. I just can't sleep. I'm tired sometimes, but it> > almost seems like I'm running on some other kind of energy. I'm> > concerned because the human body needs rest.> >> > Any comments??> >> > Thanks.> > nlassiter1000> >>

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[Guest guest]

Hi Miss Complainer..LOL.. I am taking tylenol 3 for joint pain since I can not take nsaid. I get very relaxed with it and don't seem to have trouble breathing, it helps. it relieves muscle pains also. Just my two cents.

I'm not thinking your complaining, your one of our most important persons.. to say nothing of why you would ever have reason to complain.

Love and Prayers, Peggy 9/04 ipf Florida

Z.

My lung doc will not let me take anything like Actavan or Xanax. He says it slows respiration and can cause carbon deoxide build up in my lungs. Some nights I would kill for something to settle me down. He has me on Prozac 20mg. but it doesn't do it. I have never taken anything before (except during high doses of prednisone) for nerves. Just seems that the worse the disease gets, the more tense that I am. My muscles in my back and neck are sore from tension. Complain, complain, complain...........I am so good at it.

Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana

>

> > Joyce, My doctor told me there are two kinds of Ambien: One helps you

> > go to sleep, the other is for people who fall asleep but can't

[Guest guest]

I just re-read the last post I sent and it does not read like I said it to myself. that was supposed to be a funny...sorry. Love ya,

Love and Prayers, Peggy 9/04 ipf Florida

Hi Miss Complainer..LOL.. I am taking tylenol 3 for joint pain since I can not take nsaid. I get very relaxed with it and don't seem to have trouble breathing, it helps. it relieves muscle pains also. Just my two cents.

I'm not thinking your complaining, your one of our most important persons.. to say nothing of why you would ever have reason to complain.

Love and Prayers, Peggy 9/04 ipf Florida

Z.

My lung doc will not let me take anything like Actavan or Xanax. He says it slows respiration and can cause carbon deoxide build up in my lungs. Some nights I would kill for something to settle me down. He has me on Prozac 20mg. but it doesn't do it. I have never taken anything before (except during high doses of prednisone) for nerves. Just seems that the worse the disease gets, the more tense that I am. My muscles in my back and neck are sore from tension. Complain, complain, complain...........I am so good at it.

Hugs, Joyce PF 1997 Bronchiectasis 2004 Indiana

>

> > Joyce, My doctor told me there are two kinds of Ambien: One helps you

> > go to sleep, the other is for people who fall asleep but can't

[Guest guest]

Rollie, I go to my Dr. on Wed. I have the info that Joyce passed along about perfenidone. I am going to get all the info I can. I'll post when I get it.

Love and Prayers, Peggy 9/04 ipf Florida

I have found that Tylenol PM or Benedryl helps me. Two capsuls of either

one get me 2 to 4 hours more than my usual 2 to 3 hours of sleep. I am

a 65 year old male with IPF and sleep apnea since 1997 and Parkinsonism

since 2000. I take many drugs, mirapex, sinemet, prednisone, cellcept,

niaspan, zetia, verapamil, Nac, aspirin, fish oil and a multivitamin. Of

all of these I think it may be the sinemet that makes me stay awake.

Does any one on the list know how I can get pirfenidone ?My disease

seems to be progressing more rapidly now and I would like to try it to

see if it will slow the progress. Also does anyone else use a bipap

machine and if so do you think it made your disease accelerate?

Rollie

>

> I am a 58-year old woman. I was diagnosed with ipf in 12/04. I have

> been doing very well. In fact, at this time, I no longer use

> supplementary oxygen. But I have a question. I can't seem to sleep.

> Sometimes I'm up all night and nothing my doctor has given me has

> seemed to help. I just can't sleep. I'm tired sometimes, but it

> almost seems like I'm running on some other kind of energy. I'm

> concerned because the human body needs rest.

>

> Any comments??

>

> Thanks.

> nlassiter1000

>

[Guest guest]

atavan.5mg

Watch that ativan...my new Pul. Dr. took me off of it...said it can cause co2 build up, and is really way too strong for pulmonary patients.

kiss kiss,

Ginger-Tx.

9/04 ipf

[Guest guest]

Ginger;

My pulmonologist said that on the rare occasion that the Lunesta does not help after about 60 minutes I can take .5mg of Atavan or a 2mg Valium to deal with he anxiety of not being able to sleep. I've done this with the Atavan and did not like the groggy feeling in the morning so I'll try the valium should the situation happen again. I had been experiencing very rapid heart rate and panic attack symptoms and the Dr. felt that that issue was important to address. I have a history of panic attacks and have learned many tricks to feel better; when these don't work..then I'm supposed to use the extra meds. Thanks though for your concern.

-- Z.NSIP/05 "I'm gonna be iron like a lion in Zion." Bob Marley

-------------- Original message -------------- From: TongueDancer2U@...

In a message dated 1/28/2007 4:57:59 P.M. Central Standard Time, ljz741comcast (DOT) net writes:

atavan.5mg

Watch that ativan...my new Pul. Dr. took me off of it...said it can cause co2 build up, and is really way too strong for pulmonary patients.

kiss kiss,

Ginger-Tx.

9/04 ipf