need info about sleep study

[Guest guest]

Hi

Several months ago I agreed to do a sleep study at MGH in Boston. As the

date approaches, I'm getting a bit nervous about it, and I'd really

appreciate hearing of anyone else's experiences with this.

Particularly, I'm concerned that some of my sleep routine will be seen as

very very unusual, to the people who will be examining me, and I will have a

difficult time as a result. I have a constant severe headache and

considerable PN. But even before those became severe, I've always been a

real nightowl. Not by choice, understand. I always wanted to be just like

everyone else, rising early and getting a lot done, and then being able to

fall asleep at a normal time. But only recently have I finally concluded

that all along, my physical effort was forced, and that despite being

adventurous and apparently energetic, the exertion I faced was way beyond

what most people required.

So now I simply cannot sleep until 5 or 6 AM, and even then I can only fall

asleep because I am fully wiped out. Then I usually sleep (fitfully) until

noon, when I waken due to severe PN (feet). On rare occasion I sleep until 2

AM, but it's fitful too. I never get out of bed feeling rested, in fact most

days I am fantastically groggy for the first hour. I'm very irritable during

this hour, my headache is at its worst, and I'm extremely sensitive to light

or noise.

Basically I'm afraid that the sleep techs (and doc?) will have little

respect for any of this, and try to force me into a huge alteration of my

routine for their own reasons. And that will make me very very ill, and pain

me even worse than usual. Some previous negative experiences with the labs

at MGH only compound my fear. I'm really having second thoughts, and I'm

considering canceling. However, the neuro doc that has ordered this test

thinks that it might be pivotal, in further understanding me. For one thing,

he thinks that a lot of my dizziness, grogginess, and super low energy might

be due " merely " to my inability to get enough rest. I frequently nap during

the day, usually an hour after eating, and he thinks this might go away if I

had a full night's rest. I'm not convinced, and I think these symptoms are

actually all just the result of my mito (MERRF). I wish I could know more,

about what actually goes on, in this sleep study, and especially whether

it's going to be torture without even some respect and support.

What do you think?

[Guest guest]

Hi Steve,

I had my sleep study done at BIDMC in Boston. Due to the sleep

technicians schedule, they woke me up very early (around 5 a.m. if I

remember correctly) so that I could get dressed and everyone could

finish up with the data and equipment and leave. Based on that

experience, I would be concerned about the fact that you don't

normally go to sleep until 5 a.m. If you can't sleep, they won't get

any data from you.

I suppose if I were in your shoes I would call ahead and explain the

situation. I would try to find out if there's any possibility of

monitoring your sleep during your normal sleep hours. The current

plan sounds like a set-up--not necessarily for ridicule, but at least

for a lack of useful data and a possible flare-up. You might try

explaining to them that they won't get any data this way so it will

waste their time.

It occurs to me that accomodating your sleep schedule at the sleep

study clinic should fall under the auspices of the Americans with

Disabilities Act. The reason you sleep when you do is because of your

disability and I believe you are entitled to " reasonable

accomodation. " But I don't know if you want to mess with that or not.

Good luck with this, Steve.

Best,

Reya

>

> Hi

>

> Several months ago I agreed to do a sleep study at MGH in Boston. As

the

> date approaches, I'm getting a bit nervous about it, and I'd really

> appreciate hearing of anyone else's experiences with this.

>

> Particularly, I'm concerned that some of my sleep routine will be

seen as

> very very unusual, to the people who will be examining me, and I

will have a

> difficult time as a result. I have a constant severe headache and

> considerable PN. But even before those became severe, I've always

been a

> real nightowl. Not by choice, understand. I always wanted to be just

like

> everyone else, rising early and getting a lot done, and then being

able to

> fall asleep at a normal time. But only recently have I finally

concluded

> that all along, my physical effort was forced, and that despite being

> adventurous and apparently energetic, the exertion I faced was way

beyond

> what most people required.

>

> So now I simply cannot sleep until 5 or 6 AM, and even then I can

only fall

> asleep because I am fully wiped out. Then I usually sleep (fitfully)

until

> noon, when I waken due to severe PN (feet). On rare occasion I sleep

until 2

> AM, but it's fitful too. I never get out of bed feeling rested, in

fact most

> days I am fantastically groggy for the first hour. I'm very

irritable during

> this hour, my headache is at its worst, and I'm extremely sensitive

to light

> or noise.

>

> Basically I'm afraid that the sleep techs (and doc?) will have little

> respect for any of this, and try to force me into a huge alteration

of my

> routine for their own reasons. And that will make me very very ill,

and pain

> me even worse than usual. Some previous negative experiences with

the labs

> at MGH only compound my fear. I'm really having second thoughts, and

I'm

> considering canceling. However, the neuro doc that has ordered this

test

> thinks that it might be pivotal, in further understanding me. For

one thing,

> he thinks that a lot of my dizziness, grogginess, and super low

energy might

> be due " merely " to my inability to get enough rest. I frequently nap

during

> the day, usually an hour after eating, and he thinks this might go

away if I

> had a full night's rest. I'm not convinced, and I think these

symptoms are

> actually all just the result of my mito (MERRF). I wish I could know

more,

> about what actually goes on, in this sleep study, and especially

whether

> it's going to be torture without even some respect and support.

>

> What do you think?

>

[Guest guest]

To Steve about the sleep study

I had a sleep study and my husband has had numerous ones over the years.

The sleep study is done for a purpose--identifying the quality of your sleep,

how deeply you sleep, whether or not you have sleep apenea. I think you will

get valuable information from the study no matter what. If you do have sleep

apena they can treat it. In my husband's case it has made a world of difference

in the quality of his life.

Even if you were to have a perfectly normal sleep study, then it still would

have been worth it, because then you will come out knowing to look elsewhere for

a solution to your problems. And you will not waste time in the future wondering

if your answer might have been the sleep study. As I see it, you get the test

done, you win no matter what.

As for the technicians--they have seen it all and it is not their place to judge

or have opinions about your sleep habits. They are just there doing their jobs.

As for your sleep habits, remember that they will expect you to go to bed with

the intent to sleep and it will be at night. So even if you don't normally sleep

at night, do try to sleep for the study. And be willing to alter your pattern

for one night in exchange for getting information. Perhaps you could force

yourself not to nap that day.

Some sleep studies even keep you as late as noon or 1 p.m. the next day to see

if you will fall sleep in the morning. If you have this kind of test, it would

work out very well for you.

Do go to the sleep study. Do prepare yourself for bed and try to go to sleep at

a reasonable hour--even if you are sure you will not sleep. I have known people

who have had a sleep study and then swear that they never slept all night, but

the results showed otherwise.

I thought I would not be able to sleep because they hook you up to several wires

and mine were on my forehead and I was a belly sleeper so had to lie there on my

back and just think about how I wanted to turn over so I could sleep. However, I

still managed a good sleep study in spite of the fact that the wires were

unpleasant. If you need to get up for any reason, such as to go to the bathroom,

they will come right in and unhook you so you can do so. Once I lay down and

was hooked up, I think I got up at least a few times--twice to go to the

bathroom, once I had them come in and get my socks out of my suitcase for me,

because I couldn't sleep because my feet were cold. These things can be handled

and the techs are used to it.

You do not need to sleep the entire night to have a good study. If you even fall

asleep for a couple hours at any time during the study, they can learn if you

have apenea or if there is anything unusual about your sleep.

The study only takes one night. You can do it. You will learn something from it.

Good luck and post your experience.

Michigan Jan

[Guest guest]

Steve

I think most of these questions can be answered by the sleep lab.

I have had 4 sleep studies and each time I had to go to bed around

11:00. They say that not being able to go to sleep is an important

part of the sleep study. They have had me lay quietly once in bed. I

don't have your issues, but it is hard to sleep when wired from head

to toe and in a strange bed. My first one included a day time portion.

They had me lay down for a nap every 2 hours to see if I slept and

then would awaken me after 15-20 minutes and then back in bed for a

nap. I was going to sleep every time and going to sleep quickly. Now

that I am on a C-flex, I can't sleep during the day unless I am in a

crash. I am now also taking Lunesta which helps me sleep more soundly

and a good nights sleep has reduced some of my symtoms. It is one of

the most important tests I have had and is repeated yearly now to see

what pressure my C-flex needs to be at.

laurie

> Hi

>

> Several months ago I agreed to do a sleep study at MGH in Boston. As the

> date approaches, I'm getting a bit nervous about it, and I'd really

> appreciate hearing of anyone else's experiences with this.

[Guest guest]

Hi

My husband had a sleep study done about a month ago. We live in a small town

so it was a small hospital. They let him decide what time of day to have it

done and they insisted he stay on his usual sleep schedule, which is a lot

like yours. They let him sleep for eight hours and then woke him up. After

that, he had to take a series of naps throughout the day. They still weren't

satisfied and now he has to go back for more sleep testing tomorrow (Wednesday).

Like you, he can't seem to get himself to go to sleep before 3 am and then he

sleeps until about 1pm but he doesn't feel at all rested. He doesn't have

Mito though or migraines. That's me. I had a sleep study done last year and

they found that I stop breathing during REM sleep. Lately I have been having

the

same problems as my husband (not able to get to sleep until the wee hours of

the morning).

[Guest guest]

I agree that you should talk to a sleep technician (preferably the

one you will see) before the study and explain the situation.

Have you had an 8 am cortisol test? If your sleep habits are really

screwy, perhaps you have an endocrine issue that is complicating

things.

I also agree that the point is to see what happens during normal

sleep hours. Make sure you have a " designated driver " with you to

drive you home after the test.

My sleep patterns are " relatively normal " , yet I show a lot of " slow

waves " on my EEG when awake. Have they done an EEG on you yet? That

may show something and be less annoying/destructive to you than a

full sleep test?

Take care,

RH

>

> To Steve about the sleep study

>

> I had a sleep study and my husband has had numerous ones over the

years.

>

> The sleep study is done for a purpose--identifying the quality of

your sleep, how deeply you sleep, whether or not you have sleep

apenea. I think you will get valuable information from the study no

matter what. If you do have sleep apena they can treat it. In my

husband's case it has made a world of difference in the quality of

his life.

>

> Even if you were to have a perfectly normal sleep study, then it

still would have been worth it, because then you will come out

knowing to look elsewhere for a solution to your problems. And you

will not waste time in the future wondering if your answer might have

been the sleep study. As I see it, you get the test done, you win no

matter what.

>

> As for the technicians--they have seen it all and it is not their

place to judge or have opinions about your sleep habits. They are

just there doing their jobs.

>

> As for your sleep habits, remember that they will expect you to go

to bed with the intent to sleep and it will be at night. So even if

you don't normally sleep at night, do try to sleep for the study. And

be willing to alter your pattern for one night in exchange for

getting information. Perhaps you could force yourself not to nap that

day.

>

> Some sleep studies even keep you as late as noon or 1 p.m. the next

day to see if you will fall sleep in the morning. If you have this

kind of test, it would work out very well for you.

>

> Do go to the sleep study. Do prepare yourself for bed and try to go

to sleep at a reasonable hour--even if you are sure you will not

sleep. I have known people who have had a sleep study and then swear

that they never slept all night, but the results showed otherwise.

>

> I thought I would not be able to sleep because they hook you up to

several wires and mine were on my forehead and I was a belly sleeper

so had to lie there on my back and just think about how I wanted to

turn over so I could sleep. However, I still managed a good sleep

study in spite of the fact that the wires were unpleasant. If you

need to get up for any reason, such as to go to the bathroom, they

will come right in and unhook you so you can do so. Once I lay down

and was hooked up, I think I got up at least a few times--twice to go

to the bathroom, once I had them come in and get my socks out of my

suitcase for me, because I couldn't sleep because my feet were cold.

These things can be handled and the techs are used to it.

>

> You do not need to sleep the entire night to have a good study. If

you even fall asleep for a couple hours at any time during the study,

they can learn if you have apenea or if there is anything unusual

about your sleep.

>

> The study only takes one night. You can do it. You will learn

something from it.

>

> Good luck and post your experience.

>

> Michigan Jan

>

>

[Guest guest]

Steve,

Have you told the sleep lab and the doc about y our

sleep habits? They need to know this in advance. Have

you ever tried melatonin to fall asleep?

Most of the sleep studies we've had have been at

night. Some places do them during the day. Maybe you

need one of those. Most of the time they want you to

try to sleep around 10 pm. They'll want you to be

awake by about 7 or 8am the morning before and not

take naps. We have been told that our son, who often

does not fall asleep until around 3 am would be

allowed to sleep in if he falls asleep late.

Otherwise, they wake you up around 6am, give or take.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________

Yahoo! DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.yahoo.com

[Guest guest]

--- Lynda Rose rosefarm@...> wrote:

He has severe central apnea and the cpap

> has really helped with all the problems you

> described.

Are you sure he doesn't have obstructive apnea?

Central apnea is usually treated with bipap and not CPAP.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________

Yahoo! DSL – Something to write home about.

Just $16.99/mo. or less.

dsl.yahoo.com

[Guest guest]

No it is central....his brain doesn't tell him when to breath.

Lynda

Re: need info about sleep study

--- Lynda Rose rosefarm@...> wrote:

He has severe central apnea and the cpap

> has really helped with all the problems you

> described.

Are you sure he doesn't have obstructive apnea?

Central apnea is usually treated with bipap and not CPAP.

Mom to the two best kids in the world!

http://www.caringbridge.org/visit/thomasandkatie

__________________________________________

Yahoo! DSL - Something to write home about.

Just $16.99/mo. or less.

dsl.yahoo.com

Medical advice, information, opinions, data and statements contained herein

are not necessarily those of the list moderators. The author of this e mail is

entirely responsible for its content. List members are reminded of their

responsibility to evaluate the content of the postings and consult with their

physicians regarding changes in their own treatment.

Personal attacks are not permitted on the list and anyone who sends one is

automatically moderated or removed depending on the severity of the attack.

[Guest guest]

Ummm, just noticed that I mis-spoke one little detail below. I meant to say

that I sometimes sleep until 2 PM, not AM. In other words, I usually sleep

between 6 and 8 hours. That's not counting one or two hour-long naps during

the " day " . And that's also using the term " sleep " loosely, i.e. I'm not

really sleeping well for that time, but I'm in bed anyway.

I'm having a hard time imagining that my sleep study is going to be even a

tiny bit adapted to my actual routine. And hence, I don't think the results

of the study will be really meaningful. All my life I've been told that all

I have to do is just go to bed earlier, or some variation of not hearing me

when I say that I REALLY don't sleep at all if I do that. I've tried many

times to adjust, and it simply does not work. I just cannot stand being in

bed for hours, waiting for sleep to come when it never does. So I admit it,

I'm out of bed in the wee hours, but NOT by choice.

I do expect that they will document my apnea, but so what? I already know I

have it. What I really want is to know how to " fix " it, or at least cut down

on it somewhat. I'm sure they will recommend some sort of breathing assist.

But I'm very nervous about just how difficult this study is going to be,

just to find out the obvious. Is there any reasonable chance that I'll

really learn more that's USEFUL?

Aside from finally getting a letter that helped get me approved for SSDI, I

have not had one little speck of actual help. All the docs say is, well, you

know, there's no TREATMENT for mito. So what's the point, ultimately, of all

this further testing? So the DOCTORS will know what I already know, about

me? I can't even get my docs to recommend surgery for the huge lipomas that

feel like they are slowly squeezing the back of my head to death. They

aren't SURE this will help with my headaches, they say.

Sorry to be so negative, but I'm really getting tired of this huge amount of

effort I expend, to get appointments with doctors, and pester staff until

they finally actually do the tests they said they'd do, and endure testing,

and follow up on lost reports, and so on. Anyone else feel this way, or is

there actually SOME treatment that's helped?

Steve

> Date: Tue, 3 Jan 2006 04:26:28 -0500

>

> Subject: need info about sleep study

>

> Hi

>

> Several months ago I agreed to do a sleep study at MGH in Boston. As the

> date approaches, I'm getting a bit nervous about it, and I'd really

> appreciate hearing of anyone else's experiences with this.

>

> Particularly, I'm concerned that some of my sleep routine will be seen as

> very very unusual, to the people who will be examining me, and I will have

> a

> difficult time as a result. I have a constant severe headache and

> considerable PN. But even before those became severe, I've always been a

> real nightowl. Not by choice, understand. I always wanted to be just like

> everyone else, rising early and getting a lot done, and then being able to

> fall asleep at a normal time. But only recently have I finally concluded

> that all along, my physical effort was forced, and that despite being

> adventurous and apparently energetic, the exertion I faced was way beyond

> what most people required.

>

> So now I simply cannot sleep until 5 or 6 AM, and even then I can only

> fall

> asleep because I am fully wiped out. Then I usually sleep (fitfully) until

> noon, when I waken due to severe PN (feet). On rare occasion I sleep until

> 2

> AM, but it's fitful too. I never get out of bed feeling rested, in fact

> most

> days I am fantastically groggy for the first hour. I'm very irritable

> during

> this hour, my headache is at its worst, and I'm extremely sensitive to

> light

> or noise.

>

> Basically I'm afraid that the sleep techs (and doc?) will have little

> respect for any of this, and try to force me into a huge alteration of my

> routine for their own reasons. And that will make me very very ill, and

> pain

> me even worse than usual. Some previous negative experiences with the labs

> at MGH only compound my fear. I'm really having second thoughts, and I'm

> considering canceling. However, the neuro doc that has ordered this test

> thinks that it might be pivotal, in further understanding me. For one

> thing,

> he thinks that a lot of my dizziness, grogginess, and super low energy

> might

> be due " merely " to my inability to get enough rest. I frequently nap

> during

> the day, usually an hour after eating, and he thinks this might go away if

> I

> had a full night's rest. I'm not convinced, and I think these symptoms are

> actually all just the result of my mito (MERRF). I wish I could know more,

> about what actually goes on, in this sleep study, and especially whether

> it's going to be torture without even some respect and support.

>

> What do you think?

[Guest guest]

Steve,

I hear your frustrations and have shared them many times. Why go to

doctors is a question I have asked myself many times. I have found

that I get a benefit from maybe one out of 10 visits or doctors. I have

been helped psychologically by others here sharing their experiences

of how hard it is to find doctors who can help. But, we have no

choice! We need to use good judgment to try to ascertain who can

help us and how. Reading about our condition, finding our own

solutions, and finding doctors that might help is all we can do. But,

you know that. It is a beast, but we have no alternatives. On the

subject of a sleep study, I am lined up for one, and have been

postponing it myself, but I will go soon. I don't know if you have a

choice of places, but I do, and I will visit both and try to talk to

the technicians ahead of time, so that I can find where I will be most

comfortable, psychologically and physically. What others have said

about their benefits of the CPAP is impressive, and am open minded

about it. It looks like it has potential for helping you sleep better

(whatever time of day) also. In other words, yes, the breathing assist

might help you sleep better, and the sleep study is necessary to get a

breathing assist (CPAP, BIPAP), as I see it. The suggestions that

others have made about talking to the technicians before hand sound

excellent to me. When you have the energy, can you pursue it by

getting as much information ahead of time, and try to find a place that

will let you " sleep late " ? My understanding is that, a couple hours of

sleep is all that they need to make an observation. Your questions and

concerns are valid. Only you can answer the question of what the risk

(time and aggravation) - benefit (some health benefit of sleeping

better, no matter what time of day) ratio looks like for you on this

matter. Good luck with this, Steve.

Sunny

> Ummm, just noticed that I mis-spoke one little detail below. I meant

> to say

> that I sometimes sleep until 2 PM, not AM. In other words, I usually

> sleep

> between 6 and 8 hours. That's not counting one or two hour-long naps

> during

> the " day " . And that's also using the term " sleep " loosely, i.e. I'm

> not

> really sleeping well for that time, but I'm in bed anyway.

>

> I'm having a hard time imagining that my sleep study is going to be

> even a

> tiny bit adapted to my actual routine. And hence, I don't think the

> results

> of the study will be really meaningful. All my life I've been told

> that all

> I have to do is just go to bed earlier, or some variation of not

> hearing me

> when I say that I REALLY don't sleep at all if I do that. I've tried

> many

> times to adjust, and it simply does not work. I just cannot stand

> being in

> bed for hours, waiting for sleep to come when it never does. So I

> admit it,

> I'm out of bed in the wee hours, but NOT by choice.

>

> I do expect that they will document my apnea, but so what? I already

> know I

> have it. What I really want is to know how to " fix " it, or at least

> cut down

> on it somewhat. I'm sure they will recommend some sort of breathing

> assist.

> But I'm very nervous about just how difficult this study is going to

> be,

> just to find out the obvious. Is there any reasonable chance that I'll

> really learn more that's USEFUL?

>

> Aside from finally getting a letter that helped get me approved for

> SSDI, I

> have not had one little speck of actual help. All the docs say is,

> well, you

> know, there's no TREATMENT for mito. So what's the point, ultimately,

> of all

> this further testing? So the DOCTORS will know what I already know,

> about

> me? I can't even get my docs to recommend surgery for the huge

> lipomas that

> feel like they are slowly squeezing the back of my head to death. They

> aren't SURE this will help with my headaches, they say.

>

> Sorry to be so negative, but I'm really getting tired of this huge

> amount of

> effort I expend, to get appointments with doctors, and pester staff

> until

> they finally actually do the tests they said they'd do, and endure

> testing,

> and follow up on lost reports, and so on. Anyone else feel this way,

> or is

> there actually SOME treatment that's helped?

>

> Steve

>

> >   Date: Tue, 3 Jan 2006 04:26:28 -0500

> >  

> > Subject: need info about sleep study

> >

> > Hi

> >

> > Several months ago I agreed to do a sleep study at MGH in Boston.

> As the

> > date approaches, I'm getting a bit nervous about it, and I'd really

> > appreciate hearing of anyone else's experiences with this.

> >

> > Particularly, I'm concerned that some of my sleep routine will be

> seen as

> > very very unusual, to the people who will be examining me, and I

> will have

> > a

> > difficult time as a result. I have a constant severe headache and

> > considerable PN. But even before those became severe, I've always

> been a

> > real nightowl. Not by choice, understand. I always wanted to be

> just like

> > everyone else, rising early and getting a lot done, and then being

> able to

> > fall asleep at a normal time. But only recently have I finally

> concluded

> > that all along, my physical effort was forced, and that despite

> being

> > adventurous and apparently energetic, the exertion I faced was way

> beyond

> > what most people required.

> >

> > So now I simply cannot sleep until 5 or 6 AM, and even then I can

> only

> > fall

> > asleep because I am fully wiped out. Then I usually sleep

> (fitfully) until

> > noon, when I waken due to severe PN (feet). On rare occasion I

> sleep until

> > 2

> > AM, but it's fitful too. I never get out of bed feeling rested, in

> fact

> > most

> > days I am fantastically groggy for the first hour. I'm very

> irritable

> > during

> > this hour, my headache is at its worst, and I'm extremely sensitive

> to

> > light

> > or noise.

> >

> > Basically I'm afraid that the sleep techs (and doc?) will have

> little

> > respect for any of this, and try to force me into a huge alteration

> of my

> > routine for their own reasons. And that will make me very very ill,

> and

> > pain

> > me even worse than usual. Some previous negative experiences with

> the labs

> > at MGH only compound my fear. I'm really having second thoughts,

> and I'm

> > considering canceling. However, the neuro doc that has ordered this

> test

> > thinks that it might be pivotal, in further understanding me. For

> one

> > thing,

> > he thinks that a lot of my dizziness, grogginess, and super low

> energy

> > might

> > be due " merely " to my inability to get enough rest. I frequently nap

> > during

> > the day, usually an hour after eating, and he thinks this might go

> away if

> > I

> > had a full night's rest. I'm not convinced, and I think these

> symptoms are

> > actually all just the result of my mito (MERRF). I wish I could

> know more,

> > about what actually goes on, in this sleep study, and especially

> whether

> > it's going to be torture without even some respect and support.

> >

> > What do you think?

>

>

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the

> postings and consult with their physicians regarding changes in their

> own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends

> one is automatically moderated or removed depending on the severity of

> the attack.

>

>

>

>

>

[Guest guest]

Steve

Like Sunny said - they only need a couple of hours to get useful

results. If they recommend a CPAP, etc., they need to have you wear it

to determine the correct pressure setting. I know of no one who has

gotten a CPAP, etc. without testing to determine the pressure.

Good luck,

Laurie

> Ummm, just noticed that I mis-spoke one little detail below. I meant to say

> that I sometimes sleep until 2 PM, not AM. In other words, I usually sleep

> between 6 and 8 hours. That's not counting one or two hour-long naps during

> the " day " . And that's also using the term " sleep " loosely, i.e. I'm not

> really sleeping well for that time, but I'm in bed anyway.

>

> I'm having a hard time imagining that my sleep study is going to be even a

> tiny bit adapted to my actual routine. And hence, I don't think the results

> of the study will be really meaningful. All my life I've been told that all

> I have to do is just go to bed earlier, or some variation of not hearing me

> when I say that I REALLY don't sleep at all if I do that. I've tried many

> times to adjust, and it simply does not work. I just cannot stand being in

> bed for hours, waiting for sleep to come when it never does. So I admit it,

> I'm out of bed in the wee hours, but NOT by choice.

>

> I do expect that they will document my apnea, but so what? I already know I

> have it. What I really want is to know how to " fix " it, or at least cut

> down

> on it somewhat. I'm sure they will recommend some sort of breathing assist.

> But I'm very nervous about just how difficult this study is going to be,

> just to find out the obvious. Is there any reasonable chance that I'll

> really learn more that's USEFUL?

>

> Aside from finally getting a letter that helped get me approved for SSDI, I

> have not had one little speck of actual help. All the docs say is, well,

> you

> know, there's no TREATMENT for mito. So what's the point, ultimately, of

> all

> this further testing? So the DOCTORS will know what I already know, about

> me? I can't even get my docs to recommend surgery for the huge lipomas that

> feel like they are slowly squeezing the back of my head to death. They

> aren't SURE this will help with my headaches, they say.

>

> Sorry to be so negative, but I'm really getting tired of this huge amount

> of

> effort I expend, to get appointments with doctors, and pester staff until

> they finally actually do the tests they said they'd do, and endure testing,

> and follow up on lost reports, and so on. Anyone else feel this way, or is

> there actually SOME treatment that's helped?

>

> Steve

>

> > Date: Tue, 3 Jan 2006 04:26:28 -0500

> >

> > Subject: need info about sleep study

> >

> > Hi

> >

> > Several months ago I agreed to do a sleep study at MGH in Boston. As the

> > date approaches, I'm getting a bit nervous about it, and I'd really

> > appreciate hearing of anyone else's experiences with this.

> >

> > Particularly, I'm concerned that some of my sleep routine will be seen as

> > very very unusual, to the people who will be examining me, and I will

> have

> > a

> > difficult time as a result. I have a constant severe headache and

> > considerable PN. But even before those became severe, I've always been a

> > real nightowl. Not by choice, understand. I always wanted to be just like

> > everyone else, rising early and getting a lot done, and then being able

> to

> > fall asleep at a normal time. But only recently have I finally concluded

> > that all along, my physical effort was forced, and that despite being

> > adventurous and apparently energetic, the exertion I faced was way beyond

> > what most people required.

> >

> > So now I simply cannot sleep until 5 or 6 AM, and even then I can only

> > fall

> > asleep because I am fully wiped out. Then I usually sleep (fitfully)

> until

> > noon, when I waken due to severe PN (feet). On rare occasion I sleep

> until

> > 2

> > AM, but it's fitful too. I never get out of bed feeling rested, in fact

> > most

> > days I am fantastically groggy for the first hour. I'm very irritable

> > during

> > this hour, my headache is at its worst, and I'm extremely sensitive to

> > light

> > or noise.

> >

> > Basically I'm afraid that the sleep techs (and doc?) will have little

> > respect for any of this, and try to force me into a huge alteration of my

> > routine for their own reasons. And that will make me very very ill, and

> > pain

> > me even worse than usual. Some previous negative experiences with the

> labs

> > at MGH only compound my fear. I'm really having second thoughts, and I'm

> > considering canceling. However, the neuro doc that has ordered this test

> > thinks that it might be pivotal, in further understanding me. For one

> > thing,

> > he thinks that a lot of my dizziness, grogginess, and super low energy

> > might

> > be due " merely " to my inability to get enough rest. I frequently nap

> > during

> > the day, usually an hour after eating, and he thinks this might go away

> if

> > I

> > had a full night's rest. I'm not convinced, and I think these symptoms

> are

> > actually all just the result of my mito (MERRF). I wish I could know

> more,

> > about what actually goes on, in this sleep study, and especially whether

> > it's going to be torture without even some respect and support.

> >

> > What do you think?

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

I got a bipap without any sleep studies- just from my pft results showing much

muscle weakness. The therapist came to my house to show me how it worked and

they only come out if I need them. There was no kind of followup from them which

I think there probably should have been.

Laurie Fitzgerald laurie.fitzgerald@...> wrote:

Steve

Like Sunny said - they only need a couple of hours to get useful

results. If they recommend a CPAP, etc., they need to have you wear it

to determine the correct pressure setting. I know of no one who has

gotten a CPAP, etc. without testing to determine the pressure.

Good luck,

Laurie

> Ummm, just noticed that I mis-spoke one little detail below. I meant to say

> that I sometimes sleep until 2 PM, not AM. In other words, I usually sleep

> between 6 and 8 hours. That's not counting one or two hour-long naps during

> the " day " . And that's also using the term " sleep " loosely, i.e. I'm not

> really sleeping well for that time, but I'm in bed anyway.

>

> I'm having a hard time imagining that my sleep study is going to be even a

> tiny bit adapted to my actual routine. And hence, I don't think the results

> of the study will be really meaningful. All my life I've been told that all

> I have to do is just go to bed earlier, or some variation of not hearing me

> when I say that I REALLY don't sleep at all if I do that. I've tried many

> times to adjust, and it simply does not work. I just cannot stand being in

> bed for hours, waiting for sleep to come when it never does. So I admit it,

> I'm out of bed in the wee hours, but NOT by choice.

>

> I do expect that they will document my apnea, but so what? I already know I

> have it. What I really want is to know how to " fix " it, or at least cut

> down

> on it somewhat. I'm sure they will recommend some sort of breathing assist.

> But I'm very nervous about just how difficult this study is going to be,

> just to find out the obvious. Is there any reasonable chance that I'll

> really learn more that's USEFUL?

>

> Aside from finally getting a letter that helped get me approved for SSDI, I

> have not had one little speck of actual help. All the docs say is, well,

> you

> know, there's no TREATMENT for mito. So what's the point, ultimately, of

> all

> this further testing? So the DOCTORS will know what I already know, about

> me? I can't even get my docs to recommend surgery for the huge lipomas that

> feel like they are slowly squeezing the back of my head to death. They

> aren't SURE this will help with my headaches, they say.

>

> Sorry to be so negative, but I'm really getting tired of this huge amount

> of

> effort I expend, to get appointments with doctors, and pester staff until

> they finally actually do the tests they said they'd do, and endure testing,

> and follow up on lost reports, and so on. Anyone else feel this way, or is

> there actually SOME treatment that's helped?

>

> Steve

>

> > Date: Tue, 3 Jan 2006 04:26:28 -0500

> >

> > Subject: need info about sleep study

> >

> > Hi

> >

> > Several months ago I agreed to do a sleep study at MGH in Boston. As the

> > date approaches, I'm getting a bit nervous about it, and I'd really

> > appreciate hearing of anyone else's experiences with this.

> >

> > Particularly, I'm concerned that some of my sleep routine will be seen as

> > very very unusual, to the people who will be examining me, and I will

> have

> > a

> > difficult time as a result. I have a constant severe headache and

> > considerable PN. But even before those became severe, I've always been a

> > real nightowl. Not by choice, understand. I always wanted to be just like

> > everyone else, rising early and getting a lot done, and then being able

> to

> > fall asleep at a normal time. But only recently have I finally concluded

> > that all along, my physical effort was forced, and that despite being

> > adventurous and apparently energetic, the exertion I faced was way beyond

> > what most people required.

> >

> > So now I simply cannot sleep until 5 or 6 AM, and even then I can only

> > fall

> > asleep because I am fully wiped out. Then I usually sleep (fitfully)

> until

> > noon, when I waken due to severe PN (feet). On rare occasion I sleep

> until

> > 2

> > AM, but it's fitful too. I never get out of bed feeling rested, in fact

> > most

> > days I am fantastically groggy for the first hour. I'm very irritable

> > during

> > this hour, my headache is at its worst, and I'm extremely sensitive to

> > light

> > or noise.

> >

> > Basically I'm afraid that the sleep techs (and doc?) will have little

> > respect for any of this, and try to force me into a huge alteration of my

> > routine for their own reasons. And that will make me very very ill, and

> > pain

> > me even worse than usual. Some previous negative experiences with the

> labs

> > at MGH only compound my fear. I'm really having second thoughts, and I'm

> > considering canceling. However, the neuro doc that has ordered this test

> > thinks that it might be pivotal, in further understanding me. For one

> > thing,

> > he thinks that a lot of my dizziness, grogginess, and super low energy

> > might

> > be due " merely " to my inability to get enough rest. I frequently nap

> > during

> > the day, usually an hour after eating, and he thinks this might go away

> if

> > I

> > had a full night's rest. I'm not convinced, and I think these symptoms

> are

> > actually all just the result of my mito (MERRF). I wish I could know

> more,

> > about what actually goes on, in this sleep study, and especially whether

> > it's going to be torture without even some respect and support.

> >

> > What do you think?

>

>

> Medical advice, information, opinions, data and statements contained herein

> are not necessarily those of the list moderators. The author of this e mail

> is entirely responsible for its content. List members are reminded of their

> responsibility to evaluate the content of the postings and consult with

> their physicians regarding changes in their own treatment.

>

> Personal attacks are not permitted on the list and anyone who sends one is

> automatically moderated or removed depending on the severity of the attack.

>

>

>

>

>

>

[Guest guest]

Steve,

I have postural orthostatic tacycardia (POTS) a kind of dysfunciton of the

autonomic nervous system. I have had this debilitating illness for more than 25

years and only recently are there doctors who know anything at all about it, so

yes, I do understand expending energy running to the doctors, to have tests, and

have tests turn out to be unhelpful.

A sleep study will not help you with some of your problems, however if you do,

indeed, have apenea, then it will document it and it can be handled with a C-Pap

machine or a Bi-PAP. I would think that as sick as you are, that finding relief

from even one problem would improve quality of life. My husband has sleep

apenea and sleeps every night with his Bi-PAP and it has improved his life a

lot!

As for your sleep habits, what does it matter when you sleep or what your

schedule is? If you have a C-PAP for apenea you wear it when you sleep,

whenever that is.

As for the sleep study, it is not an invasive test, just inconvenient. And you

only have to fall asleep a short time for them to collect data. Also, many

sleep studies continue through the next morning, so may well overlap with your

usual sleep pattern.

I suppose you could go and get no results and learn nothing and therefore have

wasted your time. However, if you do not go, you miss the opportunity to get

your apenea issue addressed. And you will never know just how much help it might

have been.

With my POTS, I have made it important to try to adress any and all other issues

I have because living with POTS is bad enough--I want every single other thing

that is wrong with me investigated and fixed as much as possible. I leave no

rock unturned.

Why don't you call the sleep study place and ask them if they have day

appointments? Or if your study will extend through the morning?

In the end, it is up to you. But if you decide to go, please let us know what

you found out.

Michigan Jan

[Guest guest]

Steve,

Delayed Sleep Phase Disorder (DSPD) affects 7% of all persons seeking

treatment for insomnia at sleep disorders centers, so you may not be such an

oddball after all. Granted, your case is fairly extreme, but otherwise not

uncommon. Of course, your situation is more complicated, given MERFF and

MLS.

Both light therapy and chronotherapy have been used successfully in some

studies of patients with DSPD, and there are quite a few successful

anecdotal cases. Light therapy helps reset the " body clock " aka circadian

rhythms through carefully timed and calibrated exposure to bright light.

When the retina in the eye is exposed to light, nerve impulses are

transmitted to the suprachiasmatic nucleus in the brain. This structure then

signals the brain's pineal gland to release a hormone called melatonin.

Melatonin is thought to play a role in regulating sleep/wake cycles.

http://www.sleepdisorderchannel.net/dsps/treatment.shtml

Interesting info about treatment for DSPS, including light therapy and

chronotherapy.

http://www.holisticonline.com/Light_Therapy/hol_LightTherapy.htm

More about light therapy from a holistic site.

Barbara

> Ummm, just noticed that I mis-spoke one little detail below. I meant to

say

> that I sometimes sleep until 2 PM, not AM. In other words, I usually sleep

> between 6 and 8 hours. That's not counting one or two hour-long naps

during

> the " day " . And that's also using the term " sleep " loosely, i.e. I'm not

> really sleeping well for that time, but I'm in bed anyway.

[Guest guest]

Thanks to everyone for the thoughtful insights and suggestions re my

upcoming sleep study. I will be contacting the lab, and submitting to it on

1/31, and will report my results here.

Steve D.