Re: ABSTRACT: CPAP therapy for sleep apnea in MSA

[Guest guest]

Greetings Pam!

Thanks for posting this. CPAP therapy can and does help. It's also

possible that BiPAP therapy may be an alternative. It decreases exhalation

pressure. My own experience was that even with CPAP my sleep slowly

declined in quality and quantity. A sleep study revealed with CPAP my sleep

was badly broken. However, when the sleep technician switched to BiPAP my

sleep patterns smoothed right out. No one is sure why, but it does seem to

help.

On top of that I still need Trazodone to help promote deeper sleep and

better sleep. It's not much, but it can make a difference.

Regards,

=jbf=

B. Fisher

[Guest guest]

,

If the trazadone stops working, a Baclofen at bedtime may also help. )

Next step - a Mickey Finn ) Make sure you don't take an Amantadine after

about 4 PM as that can keep you awake.

Take care, Bill and Charlotte

Fisher wrote:

Greetings Pam!Thanks for posting this. CPAP therapy can and does help. It's alsopossible that BiPAP therapy may be an alternative. It decreases exhalationpressure. My own experience was that even with CPAP my sleep slowlydeclined in quality and quantity. A sleep study revealed with CPAP my sleepwas badly broken. However, when the sleep technician switched to BiPAP mysleep patterns smoothed right out. No one is sure why, but it does seem tohelp.On top of that I still need Trazodone to help promote deeper sleep andbetter sleep. It's not much, but it can make a difference.Regards,=jbf= B. Fisher

[Guest guest]

Hi folks

CPAP actually made my apnea worse, increasing the number of events.

BiPAP has worked great. The number of events and oxygenation levels

are now within normal ranges. As an added bonus my supine blood

pressure averages about 104/57 without raising the head of the bed

and I don't need to self-cath in the middle of the night.

Still I often wake up after two hours and have difficulty falling

back to sleep. Also, according to my lastest study, I am still

missing Sleep Stages 3 and 4, the deep sleep stages. I am currently

taking one 25/100, carbo/levo cr before bedtime. Is early waking a

problem that has been helped by Trazodone or Baclofen?

Thanks

Steve

[Guest guest]

Steve,

Actually they seem to help you fall asleep rather than help you sleep through

- at least that is Charlotte's experience. Charlotte does take a 50/200

CR which should last longer. Some people have talked to their doctor and

added Deprynol at bedtime - you may want to ask your doctor about that.

Take care, Bill and Charlotte

Bigdeebe@... wrote:

Hi folksCPAP actually made my apnea worse, increasing the number of events. BiPAP has worked great. The number of events and oxygenation levels are now within normal ranges. As an added bonus my supine blood pressure averages about 104/57 without raising the head of the bed and I don't need to self-cath in the middle of the night.Still I often wake up after two hours and have difficulty falling back to sleep. Also, according to my lastest study, I am still missing Sleep Stages 3 and 4, the deep sleep stages. I am currently taking one 25/100, carbo/levo cr before bedtime. Is early waking a problem that has been helped by Trazodone or Baclofen?ThanksSteve

[Guest guest]

Steve,

One of our other members took Ambian for the sleep problems.

later and hugs,

cindy

Re: ABSTRACT: CPAP therapy for sleep apnea in MSA

> Hi folks

>

> CPAP actually made my apnea worse, increasing the number of events.

> BiPAP has worked great. The number of events and oxygenation levels

> are now within normal ranges. As an added bonus my supine blood

> pressure averages about 104/57 without raising the head of the bed

> and I don't need to self-cath in the middle of the night.

>

> Still I often wake up after two hours and have difficulty falling

> back to sleep. Also, according to my lastest study, I am still

> missing Sleep Stages 3 and 4, the deep sleep stages. I am currently

> taking one 25/100, carbo/levo cr before bedtime. Is early waking a

> problem that has been helped by Trazodone or Baclofen?

>

> Thanks

> Steve

>

>

>

[Guest guest]

Greetings Steve!

Sorry to hear someone else is also having sleep problems.

As I already noted, BiPAP also made a huge difference for me. It appears

that breathing against the continuous (C in CPAP) pressure caused irregular

sleep patterns (early and unexplained arousals .. no apnea events associated

with it). But my sleep evened out with BiPAP.

However, even with that, my doctor found " I am still missing Sleep Stages 3

and 4, the deep sleep stages " . Wow! Talk about Deja Vue ... Wow! Talk

about Deja Vue ... ;-)

Trazodone helps me. I sleep deeper and better. Without it, I do not dream.

With it, I dream more. It or similar Central Nervous System - CNS - agents

is usually prescribed in low dosages with a gradual increase upto an

effective dosage. I take 100mg about an hour before bed. Most people only

need 50mg. By the way, Trazodone is an antidepressant. However, this

dosage is considered a 'sub-clinical' dosage - that is, it does not act as

an antidepressant at this level.

Sorry for my delay in this response. Hope it helps.

Regards,

=jbf=

B. Fisher

[Guest guest]

Hi

My sleep problems I have discovered have an interesting twist. After

scheduling my Sinemet for no later than 7pm, I now wake up about 3am

but after about an hour I fall back to a great nights sleep! I also

take my temperature at 3am, it is at it's daily high at that time.

The daily low occurs after the great night's sleep, upon waking.

After monitoring my temp. I thought my " normal " was 96.6, now I don't

what normal is or if the night time temp. of 98.3 is within a normal

range. My low should be at 3am. This disease gets goofier all the

time. I have heard about night time sweats and the relationship to

infection maybe this is what this is all about.

In response to your question I now sweat less than previously. In

the mornings I actually feel chilled. I never felt cold before, this

is a major change. I am sure there are more changes to come.

Thanks

Steve

shydrager@y..., " Fisher " <jfisher@n...> wrote:

> Greetings Steve!

>

> Sorry to hear someone else is also having sleep problems.

>

> As I already noted, BiPAP also made a huge difference for me. It

appears

> that breathing against the continuous (C in CPAP) pressure caused

irregular

> sleep patterns (early and unexplained arousals .. no apnea events

associated

> with it). But my sleep evened out with BiPAP.

>

> However, even with that, my doctor found " I am still missing Sleep

Stages 3

> and 4, the deep sleep stages " . Wow! Talk about Deja Vue ...

Wow! Talk

> about Deja Vue ... ;-)

>

> Trazodone helps me. I sleep deeper and better. Without it, I do

not dream.

> With it, I dream more. It or similar Central Nervous System - CNS -

agents

> is usually prescribed in low dosages with a gradual increase upto an

> effective dosage. I take 100mg about an hour before bed. Most

people only

> need 50mg. By the way, Trazodone is an antidepressant. However,

this

> dosage is considered a 'sub-clinical' dosage - that is, it does not

act as

> an antidepressant at this level.

>

> Sorry for my delay in this response. Hope it helps.

>

>

> Regards,

> =jbf=

>

> B. Fisher

[Guest guest]

Steve,

Why do you schedule your last Sinemet so early? Charlotte takes a 50/200

CR just before she goes to bed for the night. It helps her relax for the

night.

On the temperature - "normal" is not a word in the MSA dictionary.

Take care, Bill and Charlotte

===============================

Bigdeebe@... wrote:

Hi My sleep problems I have discovered have an interesting twist. After scheduling my Sinemet for no later than 7pm, I now wake up about 3am but after about an hour I fall back to a great nights sleep! I also take my temperature at 3am, it is at it's daily high at that time. The daily low occurs after the great night's sleep, upon waking.After monitoring my temp. I thought my "normal" was 96.6, now I don't what normal is or if the night time temp. of 98.3 is within a normal range. My low should be at 3am. This disease gets goofier all the time. I have heard about night time sweats and the relationship to infection maybe this is what this is all about.In response to your question I now sweat less than previously. In the mornings I actually feel chilled. I never felt cold before, this is a major change. I am sure there are more changes t!

o come.ThanksSteve shydrager@y..., " Fisher" <jfisher@n...> wrote:

Greetings Steve!Sorry to hear someone else is also having sleep problems.As I already noted, BiPAP also made a huge difference for me. It

appears

that breathing against the continuous (C in CPAP) pressure caused

irregular

sleep patterns (early and unexplained arousals .. no apnea events

associated

with it). But my sleep evened out with BiPAP.However, even with that, my doctor found "I am still missing Sleep

Stages 3

and 4, the deep sleep stages". Wow! Talk about Deja Vue ...

Wow! Talk

about Deja Vue ... ;-)Trazodone helps me. I sleep deeper and better. Without it, I do

not dream.

With it, I dream more. It or similar Central Nervous System - CNS -

agents

is usually prescribed in low dosages with a gradual increase upto aneffective dosage. I take 100mg about an hour before bed. Most

people only

need 50mg. By the way, Trazodone is an antidepressant. However,

this

dosage is considered a 'sub-clinical' dosage - that is, it does not

act as

an antidepressant at this level.Sorry for my delay in this response. Hope it helps.Regards,=jbf= B. Fisher

[Guest guest]

Bill

I think I get a " rebound " from the Sinemet. After taking the Sinemet

I get very tired and weak for approximately two hours, no matter what

time of day. I sometimes fall asleep. Then I wake up and feel alert

until I take the next dose (two,25/100s). I tried Sinemet CR at

bedtime, generally 25/100 but at least once at 50/200, with no

benefit.

So I am trying to avoid this waking up. It seemed to work, no

additional medication and a good night's sleep. Last night however I

could not even get to sleep (could be the 76ers win). Also my

experiment is confounded by my getting a lot of exercise and sun on

the days that I slept well. Tonight I'll try again after another day

of exercise and sun. I'll email the results.

Steve

>

[Guest guest]

Steve,

It sounds like you are saying that you take 2 - 25/100's at a time - is

that right? If so you could easily be overdosing on Sinemet. What is the

exact dose and how long do you go between doses?

This is not scientific, but I have seen a trend that people with MSA who

take more than 1 gram (1000 mg) per day seem to lose almost all response

to it. Charlotte was on 1200 mg per day (L-dopa) years ago (about 1994)

and getting little benefit. They (new neuro) cut her to 600 mg and she did

better for many years. She is again approaching 1000 mg. She has been on

Sinemet for 11 years now.

I would like to see a study on Sinemet and MSA. Some people on this list

do better with the CR's (like Peg ) yet others (like Charlotte) do

better with the plain 25/100's. Jim - is Peg still on the CR's? Others

are taking the CR's with boosters of half a 25/100 (that may be Peg actually).

Maybe everyone could tell us how they take the Sinemet and how much (and

how long) it helps. That is subjective, but it may provide a clue or at

least an idea of where to go with a study. We may have tried this a year or so ago, if so it confused us, anyone remember?

Take care, Bill and Charlotte

Bigdeebe@... wrote:

BillI think I get a "rebound" from the Sinemet. After taking the Sinemet I get very tired and weak for approximately two hours, no matter what time of day. I sometimes fall asleep. Then I wake up and feel alert until I take the next dose (two,25/100s). I tried Sinemet CR at bedtime, generally 25/100 but at least once at 50/200, with no benefit.So I am trying to avoid this waking up. It seemed to work, no additional medication and a good night's sleep. Last night however I could not even get to sleep (could be the 76ers win). Also my experiment is confounded by my getting a lot of exercise and sun on the days that I slept well. Tonight I'll try again after another day of exercise and sun. I'll email the results.Steve

[Guest guest]

STUPID QUESTION BUT WHAT IS A CR?WHY R MY DOCTORS RELUCTANT TO PRESCRIBE SINAMENT( HAVE FROZEN LEGS AND SOME TREMORS EVEN) IS THERE SOMETHING BAD I DONT KNOW ABOUT?

blood pressure now 110 over 70 take each time i go to chiro-3 times a week

(sitting and standing after 10 minutes)

swollen ankles and feet

stop breathing at night, but use a cpap

in wheelchair and dont drive

seems to be progressing rapidly

[Guest guest]

Bill,

I take 2-plain 25/100s at 8am,2pm and 7pm for a total of 600mgs per

day. My neuro has given me permission to go to 1000mgs and

encouraged me to experiment with the timing and dosage. The idea

that less could be more is good news. What is Charlotte's regimen?

As a follow-up, I had a good sleep! Maybe exercise and sunlight are

enough.

Thanks

Steve

>

[Guest guest]

Steve,

If I were you, I would try a single 25/100 on rising in the AM and then

every 3-4 hours until bedtime and try to cut the usage to 5 per day or less.

You want them to work as long as possible, you are still early in the progression.

A sudden fatigue 20-30 minutes after taking your dose of 2 - 25/100's could

mean you are overdosing. The best idea with Sinemet is to find the lowest

dosage that allows you to function at as near a normal level as possible.

Have you ever tried the CR's?

See this site on the CR especially the charts:

http://www.sinemetcr.com/consumer/answers.htm

Yes exercise and sunlight are good, but neither should be overdone, especially

with MSA. Too much heat can cause real problems. Keep cool )

Take care. Bill and Charlotte

Bigdeebe@... wrote:

Bill,I take 2-plain 25/100s at 8am,2pm and 7pm for a total of 600mgs per day. My neuro has given me permission to go to 1000mgs and encouraged me to experiment with the timing and dosage. The idea that less could be more is good news. What is Charlotte's regimen?As a follow-up, I had a good sleep! Maybe exercise and sunlight are enough.ThanksSteve

[Guest guest]

check out: www.sportsdiva.com

>>> Bigdeebe@... 06/07/01 09:55PM >>> Bill I think I get a "rebound" from the Sinemet. After taking the Sinemet I get very tired and weak for approximately two hours, no matter what time of day. I sometimes fall asleep. Then I wake up and feel alert until I take the next dose (two,25/100s). I tried Sinemet CR at bedtime, generally 25/100 but at least once at 50/200, with no benefit. So I am trying to avoid this waking up. It seemed to work, no additional medication and a good night's sleep. Last night however I could not even get to sleep (could be the 76ers win). Also my experiment is confounded by my getting a lot of exercise and sun on the days that I slept well. Tonight I'll try again after another day of exercise and sun. I'll email the results. Steve >

[Guest guest]

Steve,

Note. Do not exercise too soon before sleep. Allow several hours for your

body to cool and calm down. Of course a mild stroll after dinner does not

count.

Regards

=jbf=

B. Fisher

[Guest guest]

i take 25/100 ev 4 hrs. take it, feel sleepy 45 min., have good 75 min.

terriible 2 hrs. then start again. n s pires.......more never helps. iget

depressed, constipated, weak(from orthostatic hypo) i guess.