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wewillbeatthis

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Aug 10, 2005
Messages
185
OK first I would like to thank everyone for the responses I received on the last post...

I do have some questions and was hopeing that those of us that actually go throught this each and everyday of our lives would be able to shed some light for me.

SLEEP!

Dad never had problems sleeping and now he seems to be awake all the time and not going to sleep.

He will have a few good nights and then he is up again for a night or more and then again back to sleep... This seems like a cycle.

Ok so about a month ago this started and dad was not sleeping well. It seemed that he would go into bed at around 11:30pm as usual and then try to sleep and would get up and then back down and up and down. He says that no matter what he trys to do he just can't fall asleep. I ask if he is uncomfortable and he says no.. I ask if he is breathing well and he says fine he does not feel short of breath or anything like that. No cramps nothing.... He is just not able to sleep.... He will get up and watch TV or do things around the house. Then he eventually at like 2:30 or 3:00am will get so tired that he will go into bed and fall asleep. Then he gets up at like 7:00am or so is feels rested... What is this and why does it happen? Is sleepless a normal side effect of this disease? What can we do to make it better. I already know he will not take medication...

Please respond I am so scared and no sure what to do.

I have noticed that dad has been sighing a great deal but only at rest.... Is this from stress, depression, lack of sleep ?

What is going on does dad need to go see the doctor before his mid July appointment?

Thank you in advance for your responses...
jen
 

beaner1

Active member
Joined
May 8, 2007
Messages
58
Reason
CALS
Country
CA
State
Alberta
City
Redcliff
Hi Jen,
My husband has ALS, and doesn't sleep well at all. I'm wondering too if it is a symptom of the diease.
Beaner
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Jen. I used to do that and sometimes still do. Ever noticed some of the times of my posts? With me it is anxiety. I call it the heebie jeebies. Just can't relax so either have to be exhausted or take Ativan. Hope dad will consider anxiiety meds.
AL.
 

quadbliss

Distinguished member
Joined
Dec 12, 2006
Messages
392
Reason
PALS
Diagnosis
07/1998
Country
US
State
California
City
Benicia
Hi Jen,

I don't like to take meds either, but I found to get a good nights rest on a regular basis, I had to. My outlook is so much better when I am well rested.

Mike
 

Citlalli

Member
Joined
May 25, 2007
Messages
26
Reason
CALS
Country
Mexico
State
Morelos
City
Tepoztlan
My husband Andres had insomnia for about 2 years, it finally got much better about 6 months ago. He changed his sleeping patterns to allow himself to sleep when he can rather than force himself to go to sleep just because its time. We generally go to bed at about 2 am and he gets up at 2 pm.

That helped some but the thing that made the difference was Dr Bach flower essences. he takes a few drops of Rescue Remedy before going to bed. He also takes a formula made especially for him to help with emotions during the day. It changes periodically to fit his actual situation. For both of us fllower essences have been a life saver. They also help me with anxiety and depression. We really recommend this.
 

wewillbeatthis

Distinguished member
Joined
Aug 10, 2005
Messages
185
Thank you all so much for your responses...

Dad and I streached last night.... We did some other exercises and he read some magazines before going to bed... We also decided to eat a bit eariler then usual... He feel asleep at like 11:30 or so got up to go to the bathroom at 3am and back to bed until 6:30 am... So it seems your suggestions worked...

The only thing that I still noticed the past few days is occasionally he will sigh... It is a deep sigh... Is this all realated to anxiety... I know that I was told this before but just want to make sure....

Jen
 

Carol Deboer

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Joined
May 7, 2003
Messages
343
Hey Jen, How are you doing? Henry used to sigh a lot too. A lot. Really deep sighs. I asked Henry why he did this and he said it felt good. It stretched his lungs he said. He also said he felt releif when he sighed. I guess if it makes you feel good, do it. I asked the docs about it and they had really no concrete reasons for deep sighing, other than it was common. Okay! As for sleeping, I agree with Al, do not be afraid of any meds that will help you sleep. You will feel better and stronger when you have had a good nights sleep.

Hey Al, Got word yesterday that Fisher has passed away. Do you remember him at all? Jim Parker was his real name and he had ALS for about 5 years. TBear would remember him as well. Just thought I would pass on the word to you. Talk to you soon.

Take care all,
Carol D. Stay Strong
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Yes I do remember him well. Did he ever get to see the red bikini? He would have died a happy man. lol. We sure are losing a lot of people lately. Really sucks.
AL.
 

Carol Deboer

Distinguished member
Joined
May 7, 2003
Messages
343
Yes Al,

Fisher did see the infamous bikini. What a laugh..... He smiled....... really big. Ha...

Have a good one.. Love ya.... Carol xoxo
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Problems Sleeping

My brother Timothy was having problems sleeping. He was wanting to stay up all night and day and was exhausted. I called the Doctor, also a the part-time hospice nurse had an ALS patient with the same problem. Timothy's Doctor put him on Restoril 15mg.
Its working, he sleeps at night and is up most of the day.

Please Read.

Frequently Asked Questions
What is Restoril® (temazepam)?
Restoril® (temazepam) is a safe and effective prescription sleep medication indicated for short-term insomnia. Restoril® (temazepam) is classified as a benzodiazepine hypnotic and comes in capsule form in four different doses: 7.5 mg, 15 mg, 22.5 mg, and 30 mg. The 7.5 mg dose was developed to provide patients with an option for taking the lowest effective dose of a sleep agent. The 22.5 mg dose was recently introduced as an intermediate titration option offering additional dosing flexibility.

How soon will I fall asleep?
After taking Restoril® (temazepam), sleep typically occurs within 30 minutes. You should take Restoril® (temazepam) when you are ready to go to sleep.

How long will I stay asleep?
After taking Restoril® (temazepam), sleep typically lasts for 7 hours. You should be able to stay asleep and wake up refreshed without next-day grogginess.

How long can I take Restoril® (temazepam)?
Generally, Restoril® (temazepam) is prescribed for short-term use only (7-10 days). Some people have chronic sleep problems that may require more prolonged use of sleep medicine. However, you should not use these medicines for long periods without talking with your doctor about the risks and benefits of prolonged use.

Will Restoril® (temazepam) help my sleep problems?
Restoril® (temazepam) is a safe and effective treatment for short-term insomnia. However, before taking medication it is important to identify behavioral, psychological, or physical factors that may be contributing to your sleep problems. Keeping track of your sleep habits through the use of a sleep diary is one way to help your physician determine if medication is an appropriate treatment choice for you. Often, a combination of treatment approaches, including medication and behavioral change, is necessary to improve sleep. Sleep disorders typically do not improve without taking some action.

Are there any side effects?
Restoril® (temazepam) has low potential for abuse or side effects and has been successfully prescribed for over 2 decades. However, as with all medications, patients may experience some side effects. Reported side effects for Restoril® (temazepam) capsules, as are common with other benzodiazepines, include the following: drowsiness, dizziness, lightheadedness, and difficulty with coordination. Call your doctor if you notice any untoward side effects.

Restoril® (temazepam) capsules are not to be taken with alcohol or other CNS depressants; until it is known whether there is any carryover effect the next day, patients should exercise caution while doing anything that requires complete alertness, including operating a car, aircraft, or machinery. Please read the Restoril® (temazepam) capsules complete prescribing information for additional information.

Will I feel okay the next day?
Restoril® (temazepam) studies show side effects were usually mild and of short duration. There is essentially no lingering drowsiness, no daytime performance issues, and low potential for memory loss or the return of insomnia (following drug discontinuation) associated with the use of Restoril® (temazepam).

What makes Restoril® (temazepam) different from other sleep medications?
Restoril® (temazepam) has low potential for side effects. Unlike some other sleep medications, Restoril® (temazepam) is broken down in the liver using a system that allows the drug to be easily distributed and carried away so there is less concern for drug interactions, which is especially important in elderly populations and patients taking multiple medications.

Can I take Restoril® (temazepam) if I’m also taking other medications?
Generally, Restoril® (temazepam) does not interfere with other medications, but you should always consult your physician or pharmacists about the possibility of drug interactions. Restoril® (temazepam) capsules are not to be taken with alcohol or any other CNS depressants.
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi Lorie. When you get a long post like that can you just put in the link from the site you copied it from? If you put in the link it saves space for the people that don't need that information and it makes it easier for us that can't use the scroll wheel that well and haven't got the nice programs that do that for us yet. Thanks.
AL.
 

sarah

Member
Joined
Jun 11, 2007
Messages
19
Country
US
State
Oregon
City
North Bend
Anxiety remedy without drugs

Citlalli said:
My husband Andres had insomnia for about 2 years, it finally got much better about 6 months ago. He changed his sleeping patterns to allow himself to sleep when he can rather than force himself to go to sleep just because its time. We generally go to bed at about 2 am and he gets up at 2 pm.

That helped some but the thing that made the difference was Dr Bach flower essences. he takes a few drops of Rescue Remedy before going to bed. He also takes a formula made especially for him to help with emotions during the day. It changes periodically to fit his actual situation. For both of us fllower essences have been a life saver. They also help me with anxiety and depression. We really recommend this.

Citlalli-
What are you using to help with anxiety and depression for yourself? I take care of my husband also. I do not want to take any pills, but I need to do something. Any advice will help. Thanks/
Sarah
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
To AL

Got it AL, Will do in the future!


Thanks

Lorie :-D
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
No problem. You're doing a great job.
AL.
 
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