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Old 05-29-2013, 02:13 AM #1
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My neuro wants me to get off the lorazepam I've been taking for sleep every night for the past 5 years. I started before I found him, partially because of anxiety due to the diagnosis. Yikes. I was at 1.5 mg. Now I've dropped to 1 mg plus 5 mg of Ambien. Then it's on to .5 mg of lorazepam and 10 mg of Ambien. Then ultimately it's off all lorazepam.

He told me benzodiazepines are the absolute WORST for sleep because they don't allow you to go into a deep REM sleep. He said that's not a problem with Ambien and when he gets people off benzodiazepines they come back and say I'm now dreaming all the time. And his response is "well that's normal because now you are getting deep sleep!" Benzodiazepines don't contribute to healthy sleep and they can exacerbate depression and cause cog fog and memory issues apparently.

He really believes sleep is almost more important than diet or exercise. He found that what many people thought was MS fatigue was actually bad sleep. When they started getting good uninterrupted sleep the fatigue improved significantly.

So that's my #1 goal -- fix my sleep. I also got a lecture about how the sleep you get during daylight hours is not as good as the sleep you get during the time the sun is down. I was told to stop going to bed so late and getting up so late.

In general my neuro's goal is to find medication that helps with bladder problems at night to minimize interruptions, advise drinking less water before bed, and keep pets from bothering your sleep and even snoring spouses! And the bedroom is only supposed to be for sleep or sex, nothing else.

All of this is referred to as sleep hygiene.
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Old 05-29-2013, 07:12 AM #2
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Once upon at time I was a really good sleeper - I have always been a night-owl, but 8-10 hours of quality sleep? Not a problem. Then I had open brain surgery, and it all stopped. I was no longer able to turn off my brain, with racing thoughts every night and usually no more than three-to-four hours sleep per night for about a year after my operation - I was a total zombie.

Things have improved a lot since then - still a night person, I do still have trouble falling asleep but nowhere near as much. Now, my problems come from burning legs and feet, and not sleeping due to stress from knowing that I am behind in my work because I can't seem to process or concentrate as well as I used to, which in turn reduces my productivity.

Given the opportunity, I could sleep for ten hours a night these days. I just always seem to have work (marking or lesson planning or whatever) to do until late at night - which I am sure, explains why I can' sleep.
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Old 05-29-2013, 09:08 AM #3
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I never sleep more than 2-3 hours at a stretch. Day or night. I have pets that like to eat once during the night and I guess I'm "programmed" to get up for that. It doesn't seem to bother me. I can nap during the day if I feel I need more sleep. I've never needed alot of sleep, though. I've always done well with about 5 hours of sleep total......meaning it's not consistent hours!
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Old 05-29-2013, 11:39 AM #4
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Quote:
Originally Posted by Natalie8 View Post
My neuro wants me to get off the lorazepam I've been taking for sleep every night for the past 5 years. I started before I found him, partially because of anxiety due to the diagnosis. Yikes. I was at 1.5 mg. Now I've dropped to 1 mg plus 5 mg of Ambien. Then it's on to .5 mg of lorazepam and 10 mg of Ambien. Then ultimately it's off all lorazepam.

He told me benzodiazepines are the absolute WORST for sleep because they don't allow you to go into a deep REM sleep. He said that's not a problem with Ambien and when he gets people off benzodiazepines they come back and say I'm now dreaming all the time. And his response is "well that's normal because now you are getting deep sleep!" Benzodiazepines don't contribute to healthy sleep and they can exacerbate depression and cause cog fog and memory issues apparently.

He really believes sleep is almost more important than diet or exercise. He found that what many people thought was MS fatigue was actually bad sleep. When they started getting good uninterrupted sleep the fatigue improved significantly.

So that's my #1 goal -- fix my sleep. I also got a lecture about how the sleep you get during daylight hours is not as good as the sleep you get during the time the sun is down. I was told to stop going to bed so late and getting up so late.

In general my neuro's goal is to find medication that helps with bladder problems at night to minimize interruptions, advise drinking less water before bed, and keep pets from bothering your sleep and even snoring spouses! And the bedroom is only supposed to be for sleep or sex, nothing else.

All of this is referred to as sleep hygiene.
Excellent points and be very wary of the Ambien also as it is another medication that ideally is only meant for short term use. Ask your physician about including melatonin.
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Old 05-29-2013, 11:55 AM #5
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Excellent points and be very wary of the Ambien also as it is another medication that ideally is only meant for short term use. Ask your physician about including melatonin.
Hi Jules, I also take Melatonin which gave me much more restful sleep. Ultimately I'd like to get back to pre MS days when I only took prescription sleep aids on an as needed basis and stick with melatonin every night.
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Old 05-29-2013, 12:08 PM #6
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Hi Jules, I also take Melatonin which gave me much more restful sleep. Ultimately I'd like to get back to pre MS days when I only took prescription sleep aids on an as needed basis and stick with melatonin every night.
Its funny because I never really though Melatonin would be so helpful but I love it! Its like bladder training, never thought it would work but I gave it a try and my life is so much better for it....wait thats another topic, lol.
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Old 05-29-2013, 01:53 PM #7
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I don't need any help to sleep, most nights, anymore, but I used
to take Melatonin and loved it, years ago, until the scare, of it
not being good for you and I stopped. I was much easier led in
those days.
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Old 05-29-2013, 01:58 PM #8
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Excellent points and be very wary of the Ambien also as it is another medication that ideally is only meant for short term use. Ask your physician about including melatonin.
I think I just might ask him, about that!!!
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Old 05-29-2013, 02:19 PM #9
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I think I just might ask him, about that!!!

CLIP >>>http://ods.od.nih.gov/factsheets/list-all/Melatonin/
Main Results:

Effectiveness of Exogenous Melatonin: People with a Primary Sleep Disorder: Melatonin decreased sleep onset latency; it was decreased greatly in people with delayed sleep phase syndrome and marginally in patients with insomnia. There was no evidence that melatonin had an effect on sleep efficiency. The magnitude of the effect of melatonin on sleep onset latency in people with delayed sleep phase syndrome, but not in people suffering from insomnia, appears to be clinically significant. People with a Secondary Sleep Disorder: There was no evidence that melatonin had an effect on sleep onset latency, but it increased sleep efficiency. The magnitude of the effect of melatonin on sleep efficiency in people with secondary sleep disorders appears to be clinically insignificant. People Suffering from Sleep Restriction: There was no evidence that melatonin had an effect on sleep onset latency or sleep efficiency. Safety of Exogenous Melatonin: There was no evidence of adverse effects of melatonin with short-term use.


Main Conclusions:

Evidence suggests that melatonin is not effective in treating most primary sleep disorders with short-term use, although there is some evidence to suggest that melatonin is effective in treating delayed sleep phase syndrome with short-term use. Evidence suggests that melatonin is not effective in treating most secondary sleep disorders with short-term use. No evidence suggests that melatonin is effective in alleviating the sleep disturbance aspect of jet lag and shift-work disorder. Evidence suggests that melatonin is safe with short-term use.

>>http://ods.od.nih.gov/factsheets/list-all/Melatonin/

It is Not Effective in treating most primary sleep disorders???

I'll stick to what WORKS for me, I appreciate your concern.
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Old 05-29-2013, 04:28 PM #10
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I guess the beauty of research is there is almost always something that has been written to support most all claims. It is important to explore more than one source, imo.

Melatonin isn't a silver bullet but there is evidence that supports it as likely safe and effective for some people with disordered sleeping

http://jp.physoc.org/content/561/1/339.full
http://www.gwern.net/docs/2005-brzezinski.pdf
http://onlinelibrary.wiley.com/doi/1...7.00613.x/full
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