I don't know what to even say. It is 5am and I have been awake since 12pm. I just needed to know that there are people out there that get how scary all of this can feel. I am afraid to get feedback that is gloom and doom. I really need some words of hope and encouragement. I want to believe that all of this will get better.
I have tried everything and I mean everything---I just had to vent some of this. I feel angry. I am forever trying one thing or the other. I go to bed by 9pm. I don't talk on the phone or watch tv after 7pm. What the heck?!! I am told my epinepherine is way up which is causing a lot of this.
I am boycotting all of the rules now. Tonight I just watched videos and now I am obviously on the computer. I am tired or reading, meditating, writing. ENOUGH!!! I don't want to be the good and cooperative patient any longer!!
Thanks for listening.
Posted by hopeful123 (Member # 3244) on :
i certainly have had and continue to have sleep problems, so i have an idea of what you are going through over there in connecticut. i am currently not taking antibiotics for lyme, however, i have other ongoing problems requiring medication. you don't say whether anyone is prescribing anything for sleep.
my lyme doctor prescribed elavil 10 mg. for sleep and pain. it's not a cure-all, but it's nonaddictive and it does help some. i have early waking pattern of sleep disturbance and was prescribed by the same doctor, sonata for that. not currently taking it, but it enabled me to go back to sleep and get up around 4 hours later.
as far as all of the life style changes, i have tried stuff off and on over the years. i find keeping the tv on very low on a quiet channel, like the weather channel or public tv, helps me have something to do while i'm lying there. often it puts me to sleep whether or not i have taken any meds.
also, i don't have any caffeine after 11 am and only very moderate amounts before, like 1 mug of coffee.
i know all of the things you read about this issue tell you there are MANY people like us.
anyway, i know the frustration and angst you are probably going through and i wish i could help, even a little.
Posted by Bruceallan (Member # 9317) on :
My sleep is all over the place too, I have had lyme and sleep for over 20 years,
what has worked for me is the following,
I also use eleivil (I break a 10mg or 15mg in half) (if I use a whole pill it leaves me hung over and unable to do anything the next day) it works for 2 or 3 nights and quites
melitonenon 1 mg kind you disolve under the tonge, again works for 2 or 3 nights and quits,
nighQuil works a few nights and quits,
some teas sleepy time and camomile same works and quits,
every one is different for what works and for how long, I have tried it all to get to sleep meditation, warm milk, listining to tapes of music I like, listing to nature sounds (Rain storms tapes help at times)
As you Know what makes this so bad is the exhaustion that is present, and the burning desire to just get some restfull sleep, we can be dead tired and lay there stareing at the walls or ceiling.
Because of this I have found it very critical to do the following to try to get some sleep each day,
turn off the phone ringer (have answering machine and wife has phone where I cant hear it to take calls)
and I have hooked a switch up to our door bell so I can turn it off too, and blacked out my windows with aluminum foil in the bedroom.
and when I do get to sleep (1am to 5 am) I sleep untill I wake up (noon to 2pm) I have tried to stay awake all day to try to sleep at night, and wound up going days with out sleep, and that really messes me up
(am a total emotial wreck beyond exhausted these times)(when already suffering constant exhaustion going a day or 3 with out sleep is like living death, total misery),
so my wife and I have learned that when I get to sleep take it when ever it is.
Hope this helps Hang In There, Later Bruce
PS ( tv or no tv no difference to me either, so I do watch tv when awake a positive I enjoy!!, I got lots of classic scifi and old tv series on dvd)
Posted by wenan (Member # 10993) on :
thanks for your posts. Bruce, what you said about things working for a few days and then stopping has been true for me too. Last night was better. Nice to know I am not alone in this.