I have not slept well for about a year. I have had to use Klonopin for sleep .25mg.
I restarted Tetracyline a month ago. I had been on Biaxin/plaquinel for the summer months.
I have had a headache for about a week. Which LLMD believes is related to the Lyme and a Herx reaction. It is better than last winter which had me bedridden for 6 weeks.
Over the past few days I have been sleeping for about 12 hrs straight. How nuts am I? I was flipped out when I couldn't sleep now when I finally am sleeping I am concerned about that it might be too much.
My neuro has said in the past that I need atleast 6 months of human growth hormone sleep to recover. Is this the beggining of the road back?
Take care and Peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
I learn something everytime I read a post here. I also have not been sleeping what you can call well for over a year, although i'm in my 11th month of oral abx treatment.
first it was pain, then severe numbness and pain, then w/abx it seemed that I have the insomniac episodes at around 1-5 in the morning.
I am able to stay in bed and fall back asleep but it's this feeling like I'm missing something or I need to wake up and check something all the time.
I also have nights where I can barely keep my eyes open and so fall asleep wherever I am and then wake up feeling like my poor hubby is going to think I don't want to be with him. (Although on some nights the snoring will drive me right to the couch.)
My fear of sleeping too heavily prior to abx was that if I took a muscle relaxer or pain killer to sleep that my heart might stop.
I've never discussed with my llmd the human growth hormone thing. I empathize with you and am interested in what your neuro said about the sleep.
I've been feeling much better, work full time, have a small family w/pets and try to do some toning exercises a few times a week... so I feel like I'm on the road.
I hope you are too! Lymester
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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lymeHerx001
Frequent Contributor (1K+ posts)
Member # 6215
posted
I have never slept well since childhood. MY mother says that she never got more then 4 hours a night since she was a girl.
But I think she has lyme anyway.
Well Ive been taking ambien 10mg or more for over 2 years now. It really works for the anxiety and mind but not the muscles. It has little to no muscle relaxant prperties.
Thats what I need most though.. MY muscles ache and get so tight and with the nerve pain AHH!!!
My LLMD wont give me anything that has a record of being physically adictive.. Even if it might help me short term.
He wants to clear the infection and see how that goes. The thing is though Ive platued and Im only 25% better.
I am on biaxin all the time and he added back plaquenil for the vertigo and as a cyst popper.
Ive also taken flagyl in the past.
These are the meds ive taken... YOUR LUCKY HE GIVES YOU KOLONOPIN!
oh yea and I herx TERRIBLE on samento. It must be good. But I can only take 1/4 of a capsule.
ANy more and im depressed in severe pain.
Posts: 2905 | From New England | Registered: Sep 2004
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WildCondor
Unregistered
posted
I sleep for 10-12 hours all the time, my body needs it! Do what yoru body needs, you need the rest. Its great you are finally sleeping. Melatonin works well for me.
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi prconn.
Maybe those brain lesions are healing. Sleep is good!
I sleep all night long and would LOVE to zzzzzz away about three hours every afternoon if I could figure out how to get away with it.
Snooze on!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I have heard of melatonin and the research i gathered from it I was nervous about two things.It could trigger an immune reponse.And it sounded like it has hormanal effects.Has anyone heard this? I would like to try this,in combo with my other sleep mends. dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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lyme_suz
Unregistered
posted
Hi Herx,
We have received relief from muscle pain from Trazadone and or nuerotin.
Also, antibiotics have helped, but we were too miserable.
Sorry that you are going thru this. I bet that you are tired of trying new meds!
I have many sleeping issues myself and WAS sleeping quite nicely as my doc allowed me to try a whacked-out med they usually give to people with narcolepsy.
It was GREAT SLEEP - but it also made me feel a litle bit drunk. (And boy do I have some stories to tell about that....maybe one day I'll actually return to blogging.)
Anyway - now I'm off the GREAT SLEEPING med because I would have to pay $285 @#$%ing dollars a month! I mean EXCUSE ME? ARE YOU KIDDING ME WITH THAT AMOUNT?
So I now have returned to my insomniac ways...hoping that the good doc will try me on something new. Til then I will continue to take my ONE 3mg melatonin along with a bunch of other crap.
Regarding the melatonin - I understand the potential for an immune (die off) response - and am actually not oppossed to that provided it doesn't kill me too. Haven't heard about the hormonal effects - but feel free to enlighten me.
NOW - about the topic of this post....
I am happy that you, dear PRCONN, are now sleeping well. HOWEVER, my first response when I saw the title of your post was: "OH, that sounds like COMA SLEEPING"
What is "Coma Sleeping" you ask? It's a term I picked up from a friend - but refers to the body's overwhelming desire to sleep all the time because the body is too toxic - die off is TOO MUCH and the body has to sleep as it has little energy to do much of anything else.
Here's my opinion - if you're sleeping 12 hours thru the night - that's probably a good thing - like your doc implied.
IF, however, you're taking some long a** naps and have a hard time waking up - you know, like someone needs to come blow a trumpet in your ears to stir you -- you are probably 'coma sleeping' at that point...and that, to ME, would be the sign to take a little abx vacation and to speak to the good doc about cutting down some abx doses. Just my humble opinion.
(Humble. Yeah, I'm laughing about that, too! )
Hugs, , & happy ,
-------------------- DR. Wiseass NOT a real doc - just a real wise Posts: 792 | From USA | Registered: Jan 2005
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I am just falling to sleep easily. I do use Klonopin .25 to get me there. Sleep about 8 hrs straight and then another 3-4 in and out of it. I am just to fatigued to completely wake up.
I have also noticed that my fasciculations are slowing down. Not always constant TG! I think this is also helping with sleep.
I also started PT about 4 weeks ago. I think this is all contributing to the better sleep. Although the PT can be rough. I think I have PTSD from all the Lyme pain. PT pain is rough but atleast I know the source.
Take care and Peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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I think this is good news and I'm glad you're sleeping. Your body and mind (neuro stuff) will not heal if you don't get enough sleep.
I'm seen by a top llmd and one of the first things he told me was that my neuro issues wouldn't resolve if I didn't get enough uninterrupted sleep. At that time I was only able to sleep a couple hours at a time, be up for 3-4, then sleep again. So I started taking sleeping pills.
I usu get 9-12 hours now. Occasionally I will get 7-8, but more feels best for me.
Sweet dreams!
Posts: 925 | From California | Registered: Sep 2004
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If I'm not mistaken, melatonin is a precursor to hormones our bodies need. [or is it a hormone itself?? I'll go look that up! ]
The melatonin is pretty harmless. I never had any reaction from it other than SLEEP!!!
I've taken flexeril for years and I don't think I'm addicted! The only thing that happens to me when I don't take it is that I wake up with sciatic nerve pain. So I keep taking it!
Sleep on, sister!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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