feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
I haven't been able to sleep for over a month now. I fall asleep and then wake up 2 hours later and the rest of the night is clock watching and sometimes just about drifting off.
About 4:30 am things get really wild and I toss and turn and pull the sheeets off of the bed until I decide to get up.
my doctor put me on Lyrica......its for fibromyalgia......
he put me on a low dose at night.....
it has helped tremendously.....
if you don't get into the delta 4 sleep then your body can't help heal itself..
....and you are in so much more pain the next day......its an evil cycle....
anyway thats what he put me on......
so far its been about 2-3 months and my sleep is soooooo much better.
hope that helps.... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
I am in a similar boat, though this doesn't happen too often, thank God!
I usually just have to get up. There is no way I can sleep and it does drive me absolutely nuts, because I am so tired and yet my brain is wide awake.
What was really weird about your post, is you mentioned 4:30 am...It is ALWAYS 4:30 am that my insomnia is at it's worst and I end up getting up. Strange coincidence, huh?
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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tailz
Unregistered
posted
I can't sleep either. If I fall asleep at 11pm, I'm up around midnight and again around 2am. If I fall asleep at 2am, I'm up between 4 or 4:30am.
Nothing helps, though after a few nights like this, I am sometimes able to nap from maybe 1pm to 4pm.
My sleep is all messed up, but I'm not using Lyrica.
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Huuummm, Thanks girls. I wonder about the 2 hr. sleep thing Tailz. I feel like the energizer bunny is inside of me, yet I am bushed.
GenaD, maybe these buggers like to get up at 4:30 am and go to the gym or something...geeze.
Mtree, were you not able to sleep because of pain issues? Mine is plain old insomnia keeping me awake.
I've also lost like 22 pounds in 3 months w/o trying....something is definately out of balance.
Still need some remedy suggestions.....waiting
Posts: 3975 | From usa | Registered: Aug 2007
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posted
I can't get over this 4-4:30 thing! It's not fair if those buggars want to go to the gym or party then if I can't!
-------------------- "Never underestimate the power of a few committed people to change the world. Indeed it is the only thing that ever has." --Margaret Mead Posts: 290 | From New York | Registered: May 2007
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
ditto what Gena said!
Posts: 3975 | From usa | Registered: Aug 2007
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Vermont_Lymie
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Member # 9780
posted
Have you tried an antihistamine?
One benadryl makes me sleep for many hours
Then again, one advil also is like a sleeping pill for me.
And please be sure not to combine medicines without checking with your doctor and/or pharmacist (and/or doing research yourself on it!)... combining pain killers with sleep aids can be very dangerous, as Heath Ledger unfortunately publicized...
Posts: 2557 | From home | Registered: Aug 2006
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CherylSue
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Member # 13077
posted
I guess if you treat the infection, the deeper sleep will follow. Try to relax or nap during the day. That's what I do.
Good luck.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Yea I had this once. Was almost manic.
Go on lyrica or another anti seizure med. Should do the trick!
Posts: 2905 | From New England | Registered: Sep 2004
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posted
My LLMD recommends Tryptophan and Melatonin on the homeopathic side.....and if you are drinking caffeine you may want to cut that down or out.
Any of my meds that could potentially cause sleep issues I always take in the morning to be on the safe side.
I do tend to cycle with bouts of insomnia off and on, but one of my docs allows me to take plenty of Klonopin when I need it, and .5mg is very little.....
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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sometimes it was just hard to fall asleep..... my body would not settle down.....
lyrica worked for me......so far so good...
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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tickled1
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Member # 14257
posted
That happened to me when I was at my worst. I would startle awake every couple of hrs. with my heart racing and sweating. Then I would dry heave and have diarrhea. And when I was trying to fall asleep I would twitch and jerk like crazy.
I tried ambien, trazadone and benadryl and they all made it much worse. I finally got desperate and started taking xanax which did the trick but was switched to lorazepam b/c it's a little less addictive with less rebound anxiety. They are both very addictive though.
I was on that several months and then weaned myself off and (knock on wood) was able to continue sleeping.
Posts: 2541 | From Northeast | Registered: Jan 2008
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Try B vitamins and B1. Any drug or antibiotic will strip the body of B vitamins. B1 especially helps with lying awake thinking about things and not being able to stop.
Also, walking out looking at things until feeling tired and then walking back will help get a good night's sleep.
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
Here is something that worked for me.
I have never had insomnia up until the past 6 months, and I was in lyme treatment, on antibiotics, I was though barely getting well.
Over 2 years of anitbiotics for Babesia and Lyme and small better, then worse but not better enough to go and walk somedays, very sick actually, had started to get worse, brain not good either, getting worse as you can see how I type with itty bitty words!
I was inbetween LLMD's, BUT on Minocycline, 100mgs twice a day by my Own Medical Dr, so I had to try to find something to help me, so I thought about Rifing, and so I looked up the
Insomnia Rife Frequencies, and then the Lyme Frequencies, and then matched the frequency that was for both of them, which was,
3 and 880. I then rifed these and I had NO Insomnia after 2 days or so. I still was on Minocycline. I also was getting severe nervousness off and on which I had not had, both the
insomnia and extreme nervousness came at about the same time, so I then looked up Nervousness frequencies and Lyme frequencies,
3 was the only frequency,
SO, I rifed these and I slept better. that I have been ok for about 2 months, I had some insomnia 2 nights ago, but it did not happen again, so I am waiting to see if I get it again, and I will Rife.
I am now seeing a new LLMD and he wants me to treat Babesia first, with Mepron and Azithromycin, so maybe my Insomnia is Babesia? Not sure, because Lyme frequencies helped the Insomnia.
I also feel by treating each infection, it helps with the immune system so the other infections may not be as bad? I think maybe,
I dont have a really good rife machine, I bought a cheap one 3 years ago to see if I had good success with Rife, some others told me to buy this machine and then if I had success then buy better one, I never did, Rife stopped working for me,
and was not sure if maybe I bought a better stronger machine, I would be better, I did not take the chance, I went back to antibiotics because Rife was making me dryer.
I believe Rife is good for me, it is an emergency plan I have on hand, which is good,
Rife did help me but I still needed antibiotics, things the anitbiotics did, rife did not do.
Just some suggestions.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
These are just band-aid suggestions because I'm confident that as you treat your TBD's, your sleep will get SO much better (based on my personal experience).
A friend of mine who has Lyme but is in denial (NOT treating) has chronic insomnia. She just started taking some lozenges called MoonDrops (google?) and a supplement called 5htp(150 mg a day)(increases serotonin level) and she's been sleeping.
She's SOOOOO happy. She sounded great. Couldn't hurt to try.
What I would do: Take at LEAST 1-2 mg of xanax. Call me a druggie but if that's what it takes, I do it. You cannot get well if you cannot rest and sleep.
posted
have you ALL had a SLEEP STUDY DONE FOR SLEEP APNEA, stopping breathing and waking up gasping for air?
i never would have but another lymie moderator who guided me here suggested it so i did.
YEP, SLEEP APNEA AND RESTLESS LEG SYNDROME AND SHOWED "NO DELTA 4" sleep allowing my body to heal from injuries and wake up feeling refreshed.
i've NOT slept in 35-38 YEARS! this testing proved what i'd been saying for years. i get to level 2; sometimes a short level 3 BUT NEVER LEVEL 4 !!!
i've tried every sleep med they've come up with. so i cat nap as necessary with an understanding hubby supporting me!! and on here for ungodly hours!!
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Thanks again folks! lots of good stuff here.
LauraJ, your description of startling awake is exactly what happens to me! I also feel nauseous, burp and gag, and have to use the bathroom. This is 7 0r so times per night.
I slept great before Lyme treatment and for the first 8 weeks on IV Rocephin. It was after my first herx, or drug toxcicity, don't know which it was, that this stuff began.
BettyG and others, no I have't had a sleep study, but will have one if this continues.
Clarissa, as always, thank you for your sage response...I know that I should increase the xanax but then I wory about ever getting off of them...stinks to be so anxious about everything!
NOW, for the good news! I slept last night! Took .50 xanax at 10:00 and woke up at 4:15 but went right back to sleep. Woke again at 6 but again went back to sleep. Finally got up at 9:30.
The sleep up until 4 was solid. After that I had a lot of dreams but still slept. Loads better then anything in the past month.
Now, we shall see what happens tonight. By the way, The same sleep issues happen when I try to nap....my body just won't shut down.
Bless you all! Posts: 3975 | From usa | Registered: Aug 2007
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-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
seeing new LLMD tomorrow will ask about Lyrica amongst other options. The neurologist suggested Lyrica to help with my cranial neuropathy.....so maybe? will post tomorrow.
Posts: 3975 | From usa | Registered: Aug 2007
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I guess Lyrica can make you sleepy...so thats what it does........
I'm only on 100mg.........he wanted me to build up to 150......but 100mg did the trick.
so far no side effects.....
let me know how you make out.....
mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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posted
adrenal problems can cause a wired tired feeling. Ask your doctor to check your cortisol levels. a saliva test is best.
Posts: 925 | From California | Registered: Sep 2004
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Like Clarissa said, you cannot get better without sleep so if you need meds, so be it. Or, if it's a herx, maybe reduce your abx dosage for awhile and ramp back up?
Sounds like a herx to me if you didn't have a problem b/f starting treatment as herx can intensify existing symptoms or bring about new ones. It was happening to me b/f starting treatment so it's obviously a neuro Lyme symptom.
When I started treatment however, I did wake up a few times choking and gasping for air like bettyg said. Scariest thing that's ever happened to me. It eased up when I lowered the abx a little.
I was worried I wouldn't be able to get off the xanax/lorazepam but I did. I would recommend lorazepam instead of xanax though. It definitely has less rebound anxiety which makes it less addictive. What I mean by that is when you start to come down off of it you aren't desperate for another one.
After a little while I only needed before bed to help me sleep and then a very small dose until I didn't need it at all.
Do whatever works to get you to sleep. I believe those 2 drugs work because they work on your nervous system which is what those symptoms are, neuro symptoms.
Good Luck and sweet dreams!!! Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Lyrica is for nerve pain..... they have used it for years on diabetes......
now FDA approved for Fibromyalgia.....
just my 2 cents again... mtree
-------------------- worrying about tomorrow takes its strength away from today Posts: 970 | From Point PLeasant , NJ | Registered: Jan 2008
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Lyrica is a newer version of Gabapentin (neurontin) which the FDA approved usage for just about everything. That is from autism to bipolar to insomnia. Apparentlly alot of people had problems with it and there were some lawsuits I believe.
Anyway Lyrica is newer and a little safer. It works in the brain by calming the firing of certain receptors, thereby reducing nerve pain and even brain function!
So if your not sleeping then that could be related to over firing of certain cells, no?
Just my 3 cents through my brain fog and wicked house/ mold allergies that I cant do much about.
Heres to a week of nothing but eggs and sunflower seeds. JOY!
quote:Originally posted by mtree: Lyrica is for nerve pain..... they have used it for years on diabetes......
now FDA approved for Fibromyalgia.....
just my 2 cents again... mtree
Posts: 2905 | From New England | Registered: Sep 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
Lyrica is a newer version of Gabapentin (neurontin) which the FDA approved usage for just about everything. That is from autism to bipolar to insomnia. Apparentlly alot of people had problems with it and there were some lawsuits I believe.
Anyway Lyrica is newer and a little safer. It works in the brain by calming the firing of certain receptors, thereby reducing nerve pain and even brain function!
So if your not sleeping then that could be related to over firing of certain cells, no?
Just my 3 cents through my brain fog and wicked house/ mold allergies that I cant do much about.
Heres to a week of nothing but eggs and sunflower seeds. JOY!
quote:Originally posted by mtree: Lyrica is for nerve pain..... they have used it for years on diabetes......
now FDA approved for Fibromyalgia.....
just my 2 cents again... mtree
Posts: 2905 | From New England | Registered: Sep 2004
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posted
If you ask me, I am convinced the insomniacs have Bart which causes insomnia and sudden awakedness and I would always look to treat that first. Just my 02.
having said that, when I relapsed, that was my primary symptom after never having a problem sleeping even after having Lyme for 20 yrs.
Finally after not sleeping for a month literally I succumbed to Klonopin .50 mg twice daily after trying everything else, ambien etc.
Then eventually as I got better, I only take the .50 mg at night. I sleep 6 hrs straight and sometimes nap during the day if I feel tired.
If I feel like I need it, I use amantilla to relax me. I get mine from the Cowden Protocol.
The only negative to the Klonopin is it could become addictive to the body, BUT, my LLMD says that .50 mg should not be difficult for me to stop taking. I would decrease to .25 mg to eventually none.
The other is Klonopin can interrupt the REM sleep cycle. I figured if I have dreams I am in REM sleep. He did write a script for a sleeping pill that is supposed to put you in REM sleep, however my insurance didn't cover it and I didn't buy it.
So far so good though, but you NEED that sleep, so do whatever you need to do to get it until you recover enough to ease off the meds.
Posts: 85 | From here | Registered: Jul 2007
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posted
can anyone tell me how much B1 to take to calm down your mind from too much thinking and racing thoughts? thanks Radha
Posts: 392 | From New York | Registered: Dec 2005
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posted
I've had terrible insomnia, taking klonipin, ambien, trazodone all on the same night, and still not getting deep sleep.
A sleep study showed alpha wave intrusion sleep disorder, common in fibromyalgia. I was started on xyrem, and it really has changed my life. I get really good, deep sleep and the healing is apparent.
I told the doctor that xyrem wakes me up so suddenly, and I'm so alert, I don't get long enough sleep on it (I was getting about 6 hours, and feel better if I get 8). I was put on klonipin, and the 2 work together perfectly.
Xyrem is in trials for FM sleep, and the results have been so good, it looks like it will be approved soon for alpha wave intrusion sleep disorder.
It's a hassle for doctors because they have to fill out paperwork. So, many are reluctant to sign up. But, I suggest asking for it anyway. It's the best.
[ 28. February 2008, 09:27 AM: Message edited by: daisys ]
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