posted
Is it true that if you don't get sufficient deep sleep you can't heal? I am in the process of trying Xyrem for my sleep but am not having any luck so far. I have had insomnia for over a decade and it's gotten way out of control. I am currently unemployed in part due to this symptom.
So what I'm wondering is if it's true if you don't sleep you can't get better? Is there anyone out there who has gotten better whose sleep was very poor?
I have fragmented sleep (last sleep lab showed 56 awakenings in 2.5 hours of sleep). In addition I wake up at least 6-8 times/night, sometimes a lot more. And then of course there are the days and days I either cannot fall asleep or get only 1-2 hours of sleep.
I have tried homeopathy, naturopathy (melatonin, etc) for years and years and pretty much every single sleep medication out there. Nothing works. My sleep is horrendous.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
PLEASE PLEASE Get the Book "When your body gets the blues" . I have been an insomniac for 16 years. It has helped me 95%. And when it doesn't help me it's because I haven't done it fully. All you have to do is walk 20 mins in the morning in the excatly the way the book says. It has changed my life and so many other people's. It will change yours. I cannot implore enough too get this book . I found it on PBS. I used to use sleep aids. Never helped. I don't use anything anymore, but the walking. Read the book. Good Luck
Posts: 298 | From los angeles | Registered: Mar 2006
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posted
Thanks I'll look that book up. I finally got 1 hour of sleep on the Xyrem last night. I guess that's a starting point. I hope it gets better than this though.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Cat, hey there. Have you tried Ambien CR? First thing that has helped me get to sleep, no wake-ups during the night and sleep 8 hrs. Just started it in Nov 06. Peace....is restful sleep.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Didn't read the other posts.
But, I finally gave in and asked for sleep meds from my primary doc.
Took lunesta at first. doc wrote out prescription. Insurance denied it. Saw the free 7 day trial advertised on tv. Got the lunesta. it worked.
Then, doc wrote out prescription for something else the insurance will provide for 3 months.
That worked. But, I am on the last month. So, will most likely be back where you are and looking for help with sleep.
It sure made a big difference.
Would really like to be able to sleep on my own.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
Sleep is a huge issue for me as well. I've tried just about everything except prescription drugs.
Three 3mg time released melatonin tablets aren't working any more. I've taken as many as four tabs...helped for a while then stopped.
I've tried 5-HTP (and at the same time as the melatonin).
I've tried valerian root (and also at the same time as the melatonin and the 5-HTP).
My LLMD has just given me something else, but that doesn't seem to work either--and have tried it alone and with combinations of the above.
In the past I've tried Tylenol PM, benedryl, OTC sleep aids, etc.--all of those just seem to keep me awake.
I can fall asleep okay, but wake up at 1, 2, 3...and then stay awake because I get up at 4:20. Posts: 83 | From us | Registered: Nov 2006
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WildCondor
Unregistered
posted
Sleep is essential...and you should get asd much of it as possible. Have you tried higher doses of melatonin? Combine that with benedryl, or xanax. have you tried phenegran? Knocks me out for 2 days that stuff.
When I was really suffering from Lyme insomnia I used to lake 5 mg melatonin time release, 25 mg benedryl, and .5 of xanax.
posted
Okay, wow, I was afraid to take more than 4 time release melatonin (they are 3mg for each tablet), especially since I've been taking them every night for at least 3 months. Maybe I'll have to try it.
Benedryl actually keeps me awake, but I haven't tried it in combo with the melatonin.
I have not tried it with the other things you mentioned.
Is phenegren prescription? Never heard of xanax...off to go do a search.
Posts: 83 | From us | Registered: Nov 2006
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
Xanax and Ativan work well for me. I take an Ativan an hour before bedtime and then 1/2 Xanax if I wake up and can't go back to sleep (the Xanax is shorter acting than the Ativan)
I love my Benzos.
Posts: 1761 | From USA | Registered: May 2006
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posted
It's true Benzos work great for sleep. It's also true they are very addictive for many people and can be HELL to come off of. I took Klonapin for about 12 years for restless legs and sleep issues and weaned myself over about 5 months time. It was extremely difficult. As bad as my sleep continues to be, I will never take another Benzo again in my life.
One problem with taking Benzos for sleep is that most people develop a tolerance and need to increase the dose for it to have the same effect. If they don't increase the dose, they can actually begin having signs of withdrawal (the classic one being insomnia!) in between doses. I found my sleep actually improved for awhile once I was finally off Klonapin. But, alas, it got bad again...
So, for the past month, I've been taking a low dose (15 mg) of the anti-depressant Remeron. It works pretty well and seems easy to stop. I usually skip a couple doses a week because I don't want to become dependent on taking a pill to sleep.
I'm going to check out the walking book. Another good book is Say Goodnight to Insomnia by Dr. Greg Jacobs of Harvard's Sleep Disorders Clinic. It's a Cognitive Behavioral Approach to dealing with insomnia.
Posts: 164 | From USA | Registered: Jul 2005
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posted
Cat Woman, I meant to answer your original question. I have definitely gotten much better in the 18 months I've been on abx for Lyme, Babesia, and Bartonella ... despite pretty awful sleep (often no more than a couple hours a night with an awakening or two thrown in).
I'm not recommending this, of course, but I do think one of the biggest problems many of us insomniacs have is anxious thoughts about the effects of not sleeping better. It will not help your sleep if you lay there at night thinking I've got to sleep or I won't get well. Far better to try to think positive thoughts like "I will still get well, even if I'm not sleeping well. Others have and I will, too."
Good luck!
Posts: 164 | From USA | Registered: Jul 2005
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posted
Hi. Thanks for answering. Yeah Benzo withdrawal is hell. I went through it 5 years ago. Never again! But then again I didn't taper slowly enough (my docs were clueless about how to taper so I pretty much did it on my own). I am pretty much terrified of benzos.
I don't actually lie there worrying about the lack of sleep it's just aggravating going days and days, weeks and weeks on such little sleep. I mean I get to sleep eventually but like my sleep lab showed 56 awakenings in 2.5 hours of sleep. How much rest am I really getting?
I'm supposed to try Ambien with Xyrem soon. The Xyrem and Ambien didn't work individually but maybe together they will work? Hope so but I'm not holding my breath.
I don't know how much cognitive behavioural therapy would really help my sleep. I'm in regular psychodynamic psychotherapy and it hasn't helped my sleep at all. I just think the majority of my sleep problem is physical not emotional. I don't know. I haven't read that "When your body gets the blues" book so I should check it out of the Library and give it a look.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Oh yeah I forgot to say that my sleep problem is compounded by bladder irritation. So some days I would be able to sleep but can't because my bladder is too irritated. Nothing has worked for the bladder irritation - not overactive bladder meds, nothing.
It is impossible to sleep with that bladder irritation.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
According to my doctor, your body makes natural growth hormone while you sleep and you need this to get well.
I have insomnia too as evidenced by this post at 2:58am. sigh....
Another doctor told me the bugs and parasites in your body are at their most active between 2 & 4 am. That would explain why I wake up during this time.
I have no trouble falling asleep and do not suffer anxiety of any kind. I go through spells of sleeping great and spells of waking like now.
The "walking book" is of interest to me too.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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Spells of sleeping great sound good to me. Sorry they don't last for you. I haven't had a good night's sleep in years and years. I've had insomnia since 1994 but the last 3 years have been the most brutal.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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bettyg
Unregistered
posted
were you tested for sleep apnea?
did you see test results? what did delta 4 show? mine showed ZERO on both overnight sleeps i had there.
i haven't had quality sleep in over 37 years!
after my hip replacement surgery 3-26-07, i'm so fatigued, i sleep a lot and FALL ASLEEP WITHIN 5-10 of getting into bed ... a 1st for me.
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sorry i didn't come back to respond to this thread! yes I've been tested for sleep apnea several times. no evidence of apnea, restless legs etc.
Can anyone tell me about their experience with Xyrem?
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I have been trying to figure this sleep thing out for quite some time.
Currently noticing that I need lots of quiet time and no caffeine...not even a half of a cup of coffee very early in the day.
I have figured out if I have excedrin or coffee, I may be able to go to sleep but wake up a couple of hours later and not be able to get back to sleep.
I also noticed that when I take my meds makes a difference.
I have a variety of sleep problems from not being able to sleep until the sun comes up and then waking up shortly after I fall asleep, to going to sleep and not staying a asleep, etc.
It is tricky.
I didn't take the ketek yesterday and was able to sleep through the night last night.
But, had that head stuff today and finally took two excedrin around 2 pm. Most likely will not be sleeping tonight or get little sleep.
Not sure what to tell you to help.
I think we are all different.
another thing I have noticed is that I do not sleep well at night if I do not get enough food in me during the day.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Ativan worked so well for me. I used it for about 5 months when I was at my Lyme worst. Once I began abx treatment, my sleep improved dramatically - & I wasn't ativan-dependent & didn't have any withdrawal issues. In my recent flare, I lost my sleep again, but in a much lesser way, and believe it or not, OTC Tylenol PM helped me (I know that won't work for you, that's not where you are at.)
I'm not going to speak for every case, but there is no doubt in my mind that my total inability to sleep was a huge factor in the terrible course my illness took. And it was imperative for me to regain my sleep in order to heal.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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tailz
Unregistered
posted
I get a maximum of about 4 hours of sleep per night on a good night, and it isn't restful sleep, but one that has me tossing and turning and pulling the sheets all over the place. My cat won't even sleep on me anymore, and he used to. I often get a slightly more restful sleep in the afternoon, but again, it's only a couple of hours at best.
I WAS as bad as you are though at one point, and I was not healing at all. Dietary changes helped me to get where I am now - I avoid ALL dairy products, grains, and root vegetables. I just started Cipro, and I can tell already that this one is going to interfere with my sleep because I have even worse anxiety after only one pill.
I'd recommend you consider 'electrosensitivities' since I've found EMR exposure greatly increases every one of my Lyme/babs symptoms, including sleep deprivation.
If I'm on the computer too long, my symptoms increase. If I'm at my neighbor's house, which measures anywhere from 4 to over 10 milligauss, my symptoms increase. If I'm sitting in my doctor's office, which I'm thinking might be near an airport because the Trifield meter's needle pulses every 15 seconds or so (radar? a strobe light?), my symptoms all increase.
EMR exposure messes with all sorts of neurohormones, including melatonin. If you have a cell phone or cordless phone, you should probably get rid of it.
Check this out. It's even a 'dot gov' website, which I avoid like the plague lately when searching for answers to my health concerns:
In view of reports of health problems induced by low frequency (50-60 Hz) electromagnetic fields (EMF), we carried out a study in 18 healthy subjects, comparing sleep with and without exposure to a 50 Hz/1 mu Tesla electrical field.
We found that the EMF condition was associated with reduced: total sleep time (TST), sleep efficiency, stages 3 + 4 slow wave sleep (SWS), and slow wave activity (SWA). Circulating melatonin, growth hormone, prolactin, testosterone or cortisol were not affected. The results suggest that commonly occurring low frequency electromagnetic fields may interfere with sleep.
Here's another article. In fact, I had one abnormal mammogram, but I refuse to keep allowing them to zap my chest looking for my eventual tumor:
My doctor gave me a script for Lunesta. There's no way I will pay the pharmaceutical companies $20 for my sleep though after the billions they made on my Klonopin over the last 15 years or so (and I have some left). And why didn't he give me the good "habit-forming" stuff? Heck, I cold-turkeyed it once, and look how well I'm doing! In fact, they want $343 for my Mepron co-pay. Nope. There's no way.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
I have horrible insomnia.
I take 5 mg. of Ambien when I go to bed, then 5 mg. when I wake up 3-4 hours later ... so I get 7-8 good hours sleep per night.
Ambien CR only gave me 4-5 hours, and I didn't want to take 2 of that higher dose per night.
I recently did Humaworm for parasites.
I also bought one of those green lasers GiGi talks about.
The first night I used the laser, I never had to take the second Ambien. This has gone on for three nights now! I still wake up, but it's too late to take the second half ... it's about 5:30 .... so I go to the bathroom and go back to bed ... I end up falling asleep again in about 20 minutes and sleep till 9:30!
I don't know if that's just a coincidence or what, but it's the first time I've slept so well in several months .... I've had insomnia for years.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
kam, onthmend, sixgoofykids, tailz- thanks for answering.
tailz - I still can't believe you did a cold turkey off all those benzos after being on them so long. Wow.
I try not to spend too much time on the computer before bed. I don't own a cellphone.
sixgoofykids,
what is the laser thing you're talking about? I'll have to go back and re-read the thread.
I am sensitive to caffeine and I think the coffee enemas are disrupting my sleep. It doesn't seem to matter what time of day I do them (obviously I aim for early in the morning though) they still make my sleep worse. But then pretty much everything seems to make my sleep worse it's hard to say exactly.
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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sixgoofykids
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Okay, wow, I was afraid to take more than 4 time release melatonin (they are 3mg for each tablet), especially since I've been taking them every night for at least 3 months. Maybe I'll have to try it.
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