Topic: I sleep all day, stay up all night, I surrender
jamescase20
Unregistered
posted
Should I just stay up all night? I feel terrible daytime, and around 6pm I awake and feel great all night till like 10am, then I get very tired and sleep. I been fighting this for months, and all it does is get me sleeping 24-7. I dont know what to do anymore...almost so mad feel like killing myself...but dont worry, I wont. If I take sleeping pills at night, sometimes they work, but then next morning, I STILL get tired at 10am, then I am chasing with speeders (legal stuff) and it just never ends. What the HECK can I do?????????? I know babs does this, but been on babs for um, about 2.5ish months now.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You know 2.5 months is nothing in Lyme treatment! Hang in there! I'd also stop the drugs to keep you awake. Dr. B's guidelines say no caffeine so that you rest as much as your body needs to.
Your body needs a lot of rest right now. From what I've read, nighttime is prime detox time, which can sometimes wake us up.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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jamescase20
Unregistered
posted
yes six, I cut back on caf and stopped smoking, so probly withdrawls. And I know the shot adrenals do just this effect...and I know from the ACTH my adreanals are subpar, and I am on cortef (low dose) and adrenal suppls. but still not getting over it. idk, just want out of this. I cant work like this.
posted
Babsia strain? no, never tested, but its got to be a very bad one, I stopped for just like 12 hours and it comes roaring back.. After reading the tick guide, I have a feeling its the WA1 but who knows, I got it in rhinelander wi in 2002. 105.5 fever 5 weeks, nearly died, etc.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, adrenals certainly will do that to you.
I was doing much better on sleeping and had cut back to just 5HTP and a half an Ambien. The past two nights I've had horrible insomnia ... hubby had to go sleep somewhere else .... we hadn't had to do that in months.
My only change was going back on doxy.
So, for me, it isn't the adrenals this time, though I know they were low before .... I've been working on them.
I find the 5HTP helps keep me asleep ... the Ambien makes me fall asleep.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
My adrenals were really low during the day, then would rise waaay too high at night..causing insomnia.
I started supplementing my adrenal with an herbal formula during the day, then taking Seriphos before bed-it calms down the adrenals. Now 2 months later-I sleep pretty well!
Posts: 561 | From eastcoast | Registered: Aug 2006
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Clarissa
Frequent Contributor (1K+ posts)
Member # 4715
posted
Unfortunately, the phrase "patience is a virtue" comes to mind when treating TBD's. I had NO patience b4 treating Lyme...well that's certainly changed.
I was on the SAME exact schedule you're describing for the first 6-8 mos of treating Lyme. I do not say this to discourage you because, ever since then, I've been back to normal sleeping patterns.
It WILL go away...you just have to walk through the fire. Are you working? There's no way I could have worked so I applied (and thankfully) got accepted for disability.
I'm SO sorry for your frustration...but just let it run its course. Night time eventually became my favorite time...I took baths, read books, went on the computer, watched movies, played with my dogs, called friends on the West Coast.
posted
no not working, not on disability either, its not good. Okay thx for comments, I just pulled out my adrenal book, and going to TRY to follow that faithfully. Gosh, I am STILL sleepy.
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At least I now know I'm not the only one with this stupid sleep problem. I've had the exact problem for fifteen years or longer. I have found nothing that helps. At times I can get the sleep turned around to where I sleep at night but it only last about three days and then goes back just like it was. I hate being up all night and sleeping until around 3:00 PM but that's my way of life now and there is nothing I can do about it. I can't afford a LLMD so I keep treating myself with Samento.
Posts: 2 | From Bee Branch, AR | Registered: Nov 2007
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it is ridiculous. in my case i am trying to finish this semester at graduate school (then i'm taking an indefinite BREAK i hope), and it is proving difficult.
my normal sleep schedule is 6 am- 3/4 pm,
my parents think i am insane, as does my roommate...though i try to explain it is the lyme, i think they just believe i am a vampire and like darkness
-------------------- bartonella, lyme, etc? since 8/04 Posts: 27 | From New Orleans, LA | Registered: Mar 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Well my LLMD says it is common and actually calls it "The Vampire Syndrome."
I have the same problem. I read that once you reach the point of neuro lyme, your encephalopathy of the brain has worn down the myelin sheathing and that is what causes the sleep disturbance.
I just try and knock myself out; for me Seroquel works.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
same exact problem here. so good to know i'm not alone.
(i STILL have this symptom, even though many of my other symptoms are improved.)
posted
Same problem here too. My normal sleep schedule is between 4 and 5 am to 12-1. What causes this? Adrenal glands dont know time?
I have tried breaking this pattern numerous time forcing myself to wake up at like 9 so that I can fall asleep early (at a normal time) and even though it works, it only works for a few days and than im right back to going to sleep at 5 am.
I dont understand..does Lyme only make you tired when the sun is out? Its very confusing
Posts: 370 | From NJ | Registered: Dec 2007
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bettyg
Unregistered
posted
[QUOTE]Originally posted by jamescase20:
no not working, not on disability either, its not good..........
james, how long have you NOT been working? this is critical to ssdi!!
have you applied for SSDI, disability insurance benefits? DON'T WAIT TOO LONG!
do you have my 25 pages of SSDI so you can WIN 1st time; 1st step?? if you don't have my newbie package, send me a pm asking for it ok!
trish, my hours are like yours, and have been this way for YEARS!!! no sleeping pill helps me at all! boy, i hate this
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
While I hate recommending this, Ativan/Lorazapam or Temazapam should restore your sleep temporarily to help improve your symptoms and decrease some of the damage being done via the Herxheimer reactions from treatment.
I'm not sure if you've tried it. It doesn't work for everyone, but most Lyme patients who do try it report significant improvement in being able to get to sleep and stay asleep, at least until the Ativan wears off around 4 hrs later.
Temazapam lasts longer, about 8 if I'm not mistaken. I'd start with the Ativan, then move up later if needed.
Withdrawl from taking this drug long term is "horrendous" but the benefit to risk sometimes for Lyme patients make's it necessary. I'm on chronic Ativan, and it's worked for many years. It's starting to lose it's effectivness now, and it's been about 4-5 years.
I'm at 2 mg. Most people starting off should begin at .5 to 1mg. A small dose of Melatonin could also help. I do mean small. Most people go right for the 3mg pill, and trust me, that's absolutely going to make them feel terrible.
.5 mg to 1mg is best to start off with for Melatonin. I wouldn't use the time released if getting to sleep is the problem.
If staying asleep is the problem, taking ativan with a slow release .5 or 1mg melatonin would be useful. Less is more when it comes to a lot of treatments for Lyme, at least for supplements that is.
I'm not a health care provider, so if any of these ideas interest you, research them on your own and talk with your physician.
The neuropsychiatric symptoms of Lyme Disease often cause the sleep disorder, however, the adrenal dysfunction issues, as well as thyroid issues can also trigger problems. You can do your homework on both of those.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
You right on there. Benzos may even push the ammonia out of the brain (thats what I think anyway) even the 'non benzos' might. IF you study how these drugs work, u will see my point. They shake the heck of of the gaba recp in the brain, and that should trigger a ammonia removing detox cycle. Litium orotate is more for sure for sure for this. I do sometimes take benzos, and Dr T says they even help (a little bit) rem sleep, which is amazing since most sleep aids make rem actually worse. WEll, I am sleep shifted still its noon and I feel terrible. I slept last night on 5 (4 hours apart) benedryl val. root, mela, etc and I slept but now sleep hangover, the benedryl never wears off, (2 days linger) out of benzos, not addicted though, cant get enough. Thanks.
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posted
I had this exact same schedule a little over a year ago (sleeping 9 or 10 am to 6 pm). It was maddening. Before that I was sleeping 4 or 5 am to 3 or 4 pm for years and couldn't make it shift.
The thing that helped me shift my sleep -- after years, mind you -- was nightly methylcobalamin injections combined with sublingual melatonin. Either one alone did not work. I found a small study that explained that in some cases, this combination would shift circadian rhythm disorders. It doesn't seem to work for everyone, but it is the only thing that has worked for me.
Until then, I think you should just go with it. I have found trying to change it by sheer will pretty much futile.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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