Re: 5 year old with complex IV can't stay asleep

[Guest guest]

,

After the first year of being ill my sleep patterns reversed and at that time I switched from sleeping 20/24hrs daily to having trouble staying asleep at night. I have to lay down and at least be at rest at 7 p.m. My pain gets so bad and my fatigue is just terrible if I don't go and lay down. I generally fall asleep within an hour or so and do ok until about 1-3 a.m.??? Then I either can't sleep anymore or I get into this wake/sleep cycle that actually ends up making me feel must worse. I am absolutely exhausted and feel terrible all day. For me it's just a vicious cycle. I've tried all the sleeping meds, melatonin, anti-depressants, benadryl, Alluna, Ambien, and many more and they either didn't help or just increased the prob. due to side effects. I would rather just sleep as much as my body allows then to have another prob. on top of it from taking a medication. I have no idea why I sleep like that now and neither do my docs. Especially since I'm SOOO sleepy ALL the time!!

[Guest guest]

,

After the first year of being ill my sleep patterns reversed and at that time I switched from sleeping 20/24hrs daily to having trouble staying asleep at night. I have to lay down and at least be at rest at 7 p.m. My pain gets so bad and my fatigue is just terrible if I don't go and lay down. I generally fall asleep within an hour or so and do ok until about 1-3 a.m.??? Then I either can't sleep anymore or I get into this wake/sleep cycle that actually ends up making me feel must worse. I am absolutely exhausted and feel terrible all day. For me it's just a vicious cycle. I've tried all the sleeping meds, melatonin, anti-depressants, benadryl, Alluna, Ambien, and many more and they either didn't help or just increased the prob. due to side effects. I would rather just sleep as much as my body allows then to have another prob. on top of it from taking a medication. I have no idea why I sleep like that now and neither do my docs. Especially since I'm SOOO sleepy ALL the time!!

[Guest guest]

,

After the first year of being ill my sleep patterns reversed and at that time I switched from sleeping 20/24hrs daily to having trouble staying asleep at night. I have to lay down and at least be at rest at 7 p.m. My pain gets so bad and my fatigue is just terrible if I don't go and lay down. I generally fall asleep within an hour or so and do ok until about 1-3 a.m.??? Then I either can't sleep anymore or I get into this wake/sleep cycle that actually ends up making me feel must worse. I am absolutely exhausted and feel terrible all day. For me it's just a vicious cycle. I've tried all the sleeping meds, melatonin, anti-depressants, benadryl, Alluna, Ambien, and many more and they either didn't help or just increased the prob. due to side effects. I would rather just sleep as much as my body allows then to have another prob. on top of it from taking a medication. I have no idea why I sleep like that now and neither do my docs. Especially since I'm SOOO sleepy ALL the time!!

[Guest guest]

Jean,

I actually had an overnight sleep study the first year I was ill when I was sleeping ALL the time. Nothing showed up as far as oxygen depletion or sleep apnea. I also had an actigraphy test done and it just showed that I was sleeping 17 hours a day. What I already knew but had to be proved to the doc. It wasn't a pleasant experience so I don't think I would want to have another one. I don't know if things would have changed or not?? My mom says that I do not snore. Thanks for insight though.

[Guest guest]

Jean,

I actually had an overnight sleep study the first year I was ill when I was sleeping ALL the time. Nothing showed up as far as oxygen depletion or sleep apnea. I also had an actigraphy test done and it just showed that I was sleeping 17 hours a day. What I already knew but had to be proved to the doc. It wasn't a pleasant experience so I don't think I would want to have another one. I don't know if things would have changed or not?? My mom says that I do not snore. Thanks for insight though.

[Guest guest]

;

Have you ever had overnight oximetry done .... or a sleep study. Do you

snore? Since, in many cases, Mito causes low muscle tone there is significant

possiblility for sleep apnea caused by obstruction of the airways when you

are sleeping. This causes the daytime sleepiness and the wakefulness at

night! Your body is literally starving for oxygen.

I now use a CPAP .... other folks need BiPAP. It has made a great deal of

difference to my night time sleep and my day time wakefulness. I refused

to try the meds since I feel strongly about trying to avoid the drugs as

treatment because our disease process is metabolic. The CPAP and BiPAP are

mechanical aids to cellular respiration rather than chemical!

Jean

LILQT4U1984@... wrote:

,

After the first year of being ill my sleep patterns reversed

and at that time I switched from sleeping 20/24hrs daily to having trouble

staying asleep at night. I have to lay down and at least be at rest at 7

p.m. My pain gets so bad and my fatigue is just terrible if I don't go and

lay down. I generally fall asleep within an hour or so and do ok until about

1-3 a.m.??? Then I either can't sleep anymore or I get into this wake/sleep

cycle that actually ends up making me feel must worse. I am absolutely exhausted

and feel terrible all day. For me it's just a vicious cycle. I've tried

all the sleeping meds, melatonin, anti-depressants, benadryl, Alluna, Ambien,

and many more and they either didn't help or just increased the prob. due

to side effects. I would rather just sleep as much as my body allows then

to have another prob. on top of it from taking a medication. I have no idea

why I sleep like that now and neither do my docs. Especially since I'm SOOO

sleepy ALL the time!!

Please contact mito-owner with any problems or questions.

[Guest guest]

;

Have you ever had overnight oximetry done .... or a sleep study. Do you

snore? Since, in many cases, Mito causes low muscle tone there is significant

possiblility for sleep apnea caused by obstruction of the airways when you

are sleeping. This causes the daytime sleepiness and the wakefulness at

night! Your body is literally starving for oxygen.

I now use a CPAP .... other folks need BiPAP. It has made a great deal of

difference to my night time sleep and my day time wakefulness. I refused

to try the meds since I feel strongly about trying to avoid the drugs as

treatment because our disease process is metabolic. The CPAP and BiPAP are

mechanical aids to cellular respiration rather than chemical!

Jean

LILQT4U1984@... wrote:

,

After the first year of being ill my sleep patterns reversed

and at that time I switched from sleeping 20/24hrs daily to having trouble

staying asleep at night. I have to lay down and at least be at rest at 7

p.m. My pain gets so bad and my fatigue is just terrible if I don't go and

lay down. I generally fall asleep within an hour or so and do ok until about

1-3 a.m.??? Then I either can't sleep anymore or I get into this wake/sleep

cycle that actually ends up making me feel must worse. I am absolutely exhausted

and feel terrible all day. For me it's just a vicious cycle. I've tried

all the sleeping meds, melatonin, anti-depressants, benadryl, Alluna, Ambien,

and many more and they either didn't help or just increased the prob. due

to side effects. I would rather just sleep as much as my body allows then

to have another prob. on top of it from taking a medication. I have no idea

why I sleep like that now and neither do my docs. Especially since I'm SOOO

sleepy ALL the time!!

Please contact mito-owner with any problems or questions.

[Guest guest]

;

Have you ever had overnight oximetry done .... or a sleep study. Do you

snore? Since, in many cases, Mito causes low muscle tone there is significant

possiblility for sleep apnea caused by obstruction of the airways when you

are sleeping. This causes the daytime sleepiness and the wakefulness at

night! Your body is literally starving for oxygen.

I now use a CPAP .... other folks need BiPAP. It has made a great deal of

difference to my night time sleep and my day time wakefulness. I refused

to try the meds since I feel strongly about trying to avoid the drugs as

treatment because our disease process is metabolic. The CPAP and BiPAP are

mechanical aids to cellular respiration rather than chemical!

Jean

LILQT4U1984@... wrote:

,

After the first year of being ill my sleep patterns reversed

and at that time I switched from sleeping 20/24hrs daily to having trouble

staying asleep at night. I have to lay down and at least be at rest at 7

p.m. My pain gets so bad and my fatigue is just terrible if I don't go and

lay down. I generally fall asleep within an hour or so and do ok until about

1-3 a.m.??? Then I either can't sleep anymore or I get into this wake/sleep

cycle that actually ends up making me feel must worse. I am absolutely exhausted

and feel terrible all day. For me it's just a vicious cycle. I've tried

all the sleeping meds, melatonin, anti-depressants, benadryl, Alluna, Ambien,

and many more and they either didn't help or just increased the prob. due

to side effects. I would rather just sleep as much as my body allows then

to have another prob. on top of it from taking a medication. I have no idea

why I sleep like that now and neither do my docs. Especially since I'm SOOO

sleepy ALL the time!!

Please contact mito-owner with any problems or questions.

[Guest guest]

I am so sleepy too. I have been diagnosed with narcolepsy and taking

provigil. It helps a little. I fall asleep during conversations, driving,

etc. I am going to have a sleep study done in March. I think I have an

adult onset, but can't find a Doc who agrees. I too have extreme pain and I

take MS Contin, it really helps. This is the first day I have been up I

have been in bed for a week and I am pretty dehydrated but do not want to

end up in hospital, so I am just sipping every 20 minutes. I wish their was

a drug that could hit the activity part of the brain without side effects.

Good luck to all the sleepy people today. May God give us all a little

energy today.

mom to Colby,13,COXIV,LCHAD,ACC,ADHD and hypothroidism. Chad, 15, healthy,

Caleb, 10, also healthy

>From: LILQT4U1984@...

>Reply-To: Mito

>To: Mito

>Subject: Re: 5 year old with complex IV can't stay asleep

>Date: Tue, 3 Feb 2004 07:44:02 EST

>

>,

>After the first year of being ill my sleep patterns reversed and at that

>time I switched from sleeping 20/24hrs daily to having trouble staying

>asleep at

>night. I have to lay down and at least be at rest at 7 p.m. My pain gets

>so

>bad and my fatigue is just terrible if I don't go and lay down. I

>generally

>fall asleep within an hour or so and do ok until about 1-3 a.m.??? Then I

>either can't sleep anymore or I get into this wake/sleep cycle that

>actually ends

>up making me feel must worse. I am absolutely exhausted and feel terrible

>all day. For me it's just a vicious cycle. I've tried all the sleeping

>meds,

>melatonin, anti-depressants, benadryl, Alluna, Ambien, and many more and

>they

>either didn't help or just increased the prob. due to side effects. I

>would

>rather just sleep as much as my body allows then to have another prob. on

>top

>of it from taking a medication. I have no idea why I sleep like that now

>and

>neither do my docs. Especially since I'm SOOO sleepy ALL the time!!

>

_________________________________________________________________

Check out the coupons and bargains on MSN Offers!

http://shopping.msn.com/softcontent/softcontent.aspx?scmId=1418

[Guest guest]

I am so sleepy too. I have been diagnosed with narcolepsy and taking

provigil. It helps a little. I fall asleep during conversations, driving,

etc. I am going to have a sleep study done in March. I think I have an

adult onset, but can't find a Doc who agrees. I too have extreme pain and I

take MS Contin, it really helps. This is the first day I have been up I

have been in bed for a week and I am pretty dehydrated but do not want to

end up in hospital, so I am just sipping every 20 minutes. I wish their was

a drug that could hit the activity part of the brain without side effects.

Good luck to all the sleepy people today. May God give us all a little

energy today.

mom to Colby,13,COXIV,LCHAD,ACC,ADHD and hypothroidism. Chad, 15, healthy,

Caleb, 10, also healthy

>From: LILQT4U1984@...

>Reply-To: Mito

>To: Mito

>Subject: Re: 5 year old with complex IV can't stay asleep

>Date: Tue, 3 Feb 2004 07:44:02 EST

>

>,

>After the first year of being ill my sleep patterns reversed and at that

>time I switched from sleeping 20/24hrs daily to having trouble staying

>asleep at

>night. I have to lay down and at least be at rest at 7 p.m. My pain gets

>so

>bad and my fatigue is just terrible if I don't go and lay down. I

>generally

>fall asleep within an hour or so and do ok until about 1-3 a.m.??? Then I

>either can't sleep anymore or I get into this wake/sleep cycle that

>actually ends

>up making me feel must worse. I am absolutely exhausted and feel terrible

>all day. For me it's just a vicious cycle. I've tried all the sleeping

>meds,

>melatonin, anti-depressants, benadryl, Alluna, Ambien, and many more and

>they

>either didn't help or just increased the prob. due to side effects. I

>would

>rather just sleep as much as my body allows then to have another prob. on

>top

>of it from taking a medication. I have no idea why I sleep like that now

>and

>neither do my docs. Especially since I'm SOOO sleepy ALL the time!!

>

_________________________________________________________________

Check out the coupons and bargains on MSN Offers!

http://shopping.msn.com/softcontent/softcontent.aspx?scmId=1418

[Guest guest]

I am so sleepy too. I have been diagnosed with narcolepsy and taking

provigil. It helps a little. I fall asleep during conversations, driving,

etc. I am going to have a sleep study done in March. I think I have an

adult onset, but can't find a Doc who agrees. I too have extreme pain and I

take MS Contin, it really helps. This is the first day I have been up I

have been in bed for a week and I am pretty dehydrated but do not want to

end up in hospital, so I am just sipping every 20 minutes. I wish their was

a drug that could hit the activity part of the brain without side effects.

Good luck to all the sleepy people today. May God give us all a little

energy today.

mom to Colby,13,COXIV,LCHAD,ACC,ADHD and hypothroidism. Chad, 15, healthy,

Caleb, 10, also healthy

>From: LILQT4U1984@...

>Reply-To: Mito

>To: Mito

>Subject: Re: 5 year old with complex IV can't stay asleep

>Date: Tue, 3 Feb 2004 07:44:02 EST

>

>,

>After the first year of being ill my sleep patterns reversed and at that

>time I switched from sleeping 20/24hrs daily to having trouble staying

>asleep at

>night. I have to lay down and at least be at rest at 7 p.m. My pain gets

>so

>bad and my fatigue is just terrible if I don't go and lay down. I

>generally

>fall asleep within an hour or so and do ok until about 1-3 a.m.??? Then I

>either can't sleep anymore or I get into this wake/sleep cycle that

>actually ends

>up making me feel must worse. I am absolutely exhausted and feel terrible

>all day. For me it's just a vicious cycle. I've tried all the sleeping

>meds,

>melatonin, anti-depressants, benadryl, Alluna, Ambien, and many more and

>they

>either didn't help or just increased the prob. due to side effects. I

>would

>rather just sleep as much as my body allows then to have another prob. on

>top

>of it from taking a medication. I have no idea why I sleep like that now

>and

>neither do my docs. Especially since I'm SOOO sleepy ALL the time!!

>

_________________________________________________________________

Check out the coupons and bargains on MSN Offers!

http://shopping.msn.com/softcontent/softcontent.aspx?scmId=1418

[Guest guest]

, My son is on risperdal, it's a mood stabilizer, but the developmantal spc. see's prescribed for sleeping issues.

It's the best thing that ever happened for us!

goodluck!