posted
Hi, I'm new here, the information is amazing !!
I have a severe sleep problem, (sick for 11 years, diagnosed with lyme disease and co-infections and being treated for 16 months).
I have major insomnia and am worried because I know that adequate sleep is very important.
Sleeping tablets really dont even help. Any suggestions are very much appreciated!!!! What works for people ?
Posts: 21 | From Ireland | Registered: Oct 2006
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posted
When all sleep meds failed after a few months on each, I began having many new neurological symptoms that scared the living daylights out of me.
I could not make ANY decisions by myself or put forth the effort to go to a doc who could help.
I am so fortunate that my daughter took matters into her own hands and got me an emergency appt. with a psychiatrist.
This new doc prescribed Seroquel, primarily used as an anti-psychotic med. The psychiatrist told me that I ought to sleep as much as possible, eighteen hours a day if I could.
After beginning Seroquel I had restorative sleep that I had not had for what seemed like years. And my neurological symptoms greatly diminished.
The only side effects I have experienced is weight gain.....which may or may not be from the Seroquel.
I am not a health care professional, only a Lymie who is sharing what worked for me. Good luck in finding a doc and some medication that helps you!
Janet
-------------------- DISCLAIMER: No information presented above should be considered medical advice or take the place of advice given by a medical professional. Links to other sites are provided merely for ease of research. Posts: 287 | From Tennessee | Registered: Sep 2006
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posted
Thanks Janet, and good to hear that you have found something to help you sleep. i will check it out. Everybit of information helps.
Posts: 21 | From Ireland | Registered: Oct 2006
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posted
Thank you ! I take 6mg of melatonin every night (which does make me feel sleepy though doesnt help me actually sleep much) and have tried ambien in the past. It didnt help much.
Thanks for the suggestions though !
Posts: 21 | From Ireland | Registered: Oct 2006
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I've had Lyme for about 2 1/2 years and was unable to sleep most of that time. I've tried antidepressants, sleeping pills and melatonin and none of those worked for me.
I've recently come across two products which have helped. One is a product called Peter Gillham's Natural Vitality, Natural Calm, Sweet Lemon Flavor. It's mainly magnesium citrate. You drink it hot like tea before bed and it tastes very good.
The second product is Source Naturals, Theanine Serene ( with Relora ). I'm sure you can get them at any health food store. I purchase mine through iherb.com.
Hope that helps. Cat woman
Posts: 9 | From PA | Registered: Feb 2005
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posted
It took me 20 years to finally find something for sleep. I would sleep in 2 or 3 hour increments and then wake up with my heart and brain racing.
I was given Xyrem (has the date rape drug in it now approved for various sleep disorders) which you literally cannot wake up once you take it. I also took Sonata along with it so I would "feel" sleepy at bedtime. The Xyrem doesn't make you feel sleepy so its a strange way to fall asleep.
I took it for about a year with great results only I didn't like the fact that I couldn't wake up if I needed to.
I've been on Mangosteen Juice (brand I use is Xango) for 4 months and haven't needed any sleep meds after the second month.
posted
Thanks Folks. I'm living in Ireland so some of the natural supplements may not be available here. I'll have a look, or try online... its sometimes hard to import things here also....
I dont think I would like to take xyrem - (though have never heard of it before now) but wouldnt like to not be able to wake up, in case of emergency. It sounds abit dangerous to me....
Appreciate all the suggestions !
Posts: 21 | From Ireland | Registered: Oct 2006
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
I take three different things for sleep:
First, melatonin. I get time-released melatonin -- 3 mg. and take a half a night. If I try to take regular melatonin, I can get to sleep but then wake up suddenly after only about 4 hours.
xanax -- I keep cutting back and am now down to...well, a quarter of a low-dose pill.
Peace and Calming essential oil. I rub this on my temples and on my wrists. The oil is made by Young Living.
Hope this helps and you're able to get some sleep soon!
Andie
Posts: 2549 | From never never land | Registered: May 2005
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Getting hormones balanced is very important. Read John Lee, M.D. - just do a search on internet. Progesterone is a big one.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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bettyg
Unregistered
posted
Welcome happy, I'll send you a PM, private message, with my newbie links/advise.
SLEEP has been a MAJOR problem for me at least 35+ years!
Have you had a sleep study done to see if you hae sleep APNEA, where you stop breathing and wake up gaspng for air? Folks on another lyme board suggested it, and I had it done on 2 separate overnight stays at hospital.
Yes, I have that and restless leg syndrome, but it showed I get NO DELTA 4 sleep, where the body rejuvenates healing injuries and you wake up feeling refreshed.
I know I haven't sleep in over 35 years ... NOT QUALITY SLEep.
I've tried every sleeping pill there was; no luck; many made me feel like a walking zombie when I got up.
Now since July when my new LLMD started me on 22 NEW supplements including 4 compounded pharmacy meds, they make me so TIRED; I can barely stay awake longer than 2-4 hours.
Longest I've ever slept is 3 hrs. without a pee call which used to be 8-14 times per night!
I lay down every time I become tired; if only for 30=60 minutes at a time. So I wish you the BEST of luck getting quality sleep.
I'll send you the PM while I'm thinking about it ok. Bettyg
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posted
Goodness bettyg! how have you managed to stay sane on such little sleep? I can't imagine it for 35+ years! I have the frequent awakenings too and also bladder irritation and awakenings due to that (usually 6-10 times/night). The last 3.5 years like this have been hell. I've had insomnia for 10 years but not like this!
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Hi I do not think I have slept more than 3 hours straight in 6 months. I am now on IV Rocephin for 18 days and zith for 4 (cant help counting). I have been taking Ambien CR. It gets me to sleep okay most of the time but I wake up and cannot get back to sleep. I do not know about everyone else but since I am on the meds I have also had horrific nightmares. I hope this means it is working Posts: 422 | From CT | Registered: Oct 2007
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yes I have tons of nightmares. For me this has been ongoing for a few yeras (pre-Lyme diagnosis and treatment). But I would bet it could be from die off too.
Do you have recurring nightmares? Some medications can cause nightmares (like beta blockers which I'm on but haven't really noticed the nightmares are worse).
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Hi No, I think they are all horrifically different.. . I did not have these before Lyme..weird. It does not help with the wonderful lack of sleep issue.
Posts: 422 | From CT | Registered: Oct 2007
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Monica, I take 5 mg of regular Ambien when I go to bed, then 5 more mg. three or four hours later when I wake up. I can get 3-4 hours sleep from 5 mg .... so that gives me a decent amount of sleep per day.
The Ambien CR gives me maybe 5 hours sleep ... so, it's not long enough, but too long to take a second ... plus I wouldn't take a second Ambien CR because it's so much stronger.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I hadn't siept well for yaers until this week.
I was prescribed seroquel and it worked tremendously. I don't think ihave slept this good ever.
was told would help with moods also if I took it consistantly every night.
she also said I could take a smaller dose during the day for anxiety. believes better to do at this point than prescribe benzoz.
Posts: 36 | From woburn,ma | Registered: Nov 2007
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
Bart treatment has helped my brain relax and I am finally able to sleep through the night.
Posts: 1603 | From ny | Registered: Aug 2006
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
My sleep still is not normal, even with sleep meds, but it is better with them than without.
I use a combo for sleep and pain. Together they work. Alone, they don't.
I take trazodone, gabapentin, cyclobenzaprine, and clonazepam, along with tramadol.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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bettyg
Unregistered
posted
quote:Originally posted by CatWoman:
Goodness bettyg! how have you managed to stay sane on such little sleep? I can't imagine it for 35+ years!
I have the frequent awakenings too and also bladder irritation and awakenings due to that (usually 6-10 times/night). The last 3.5 years like this have been hell. I've had insomnia for 10 years but not like this!
catwoman, needless to say it's been pure hell; was terrible for my former co-workers too. fast temper, etc. always tired!
extremely hard to concentrate and then add these things:
1. ALL LLIGHTS, GLARE, & REFLECTION! i had to have high insulated walls, 80% of my lights out over me and surrounding me.
2. NOISE - SOUNDS: NEEDED DOORS on reducing noise and PRINTER COVERS for pcs tat did continuous report printing.
3. chemical sensitivities were awful; bathroom cleaning toilet cleaners left in there overnight. SMOKE/CIGARETTE SMOKE on folk's clothing. perfume, cologne, after shave, hair spray, OFFICE SUPPLIES...heavy duty markers, some foods ,etc.
4. also during this time, i had 6 immediate family members die during lengthy illnesses.
am i sane? i hope so, but it's been a road that they had to keep building as i went along.
i'm worse than 1 yr. ago; that's why i'm on here to wee am hours!
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posted
get the Sleep Study and get a Sleep Machine (CPAP or Auto CPAP).. regardless of what ordering Dr tells you. i wouldn't have one if my Dr (ENT) or Insur had it their way.
i recently upgraded to Auto CPAP b/c i had a hunch i needed more pressure at times (altho sleep study didn't indicate it would be useful).
Insur forced me to do a double study in 1 night (a crap study i soon learned). 3-4 hrs into a terrible nights sleep, they wake
you up, shove a stock mask on you and play with pressure for next 2-3 hrs (not enough time to conduct a legit study).
my CPAP pressure was set at 5 because Ducks said i barely needed assistance. an Auto CPAP adjusts on its own.. a few times a night i reach as high as 10 according to my first Auto Report.
Auto CPAP gives a detailed sleep report (similar to sleep study). my first report fully supported my hunch and i'm sleeping better than ever now. the Drs & Insur could care less!
best move i made for getting REFRESHING sleep. i sleep on my back so the mask doesn't bother me one bit. you MUST do
whatever it takes to get well.. regardless of discomfort, pain or cost. i don't leave home without it! -- sonicbmx
-------------------- "The hell with Drs.. we have each other!" My story began here:
posted
I found 25mg benadryl at bedtime generally works for me. If I need more, 1/2 tab Ativan works fine. I think it's so important to find the sleep aids that work for us.
Posts: 13171 | From San Francisco | Registered: May 2006
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dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
I tried Melatonin - kept me up and wired all night after initially making me sleepy for 1/2 hour.
Tried Sonata, same thing plus an awful hangover for the entire next day that made me feel ill.
I was also rx'd Trazodone but just when I was about to start it a friend of mine told me she took it and it made her so dizzy she fell in the shower. That kind of scared me too much to try it. Not to mention the list of horrendous side effects as long as my arm.
So, I stick with Benadryl most nights which usually give me about 5 hours straight. Not enough though.
I want a sleep med that is non-addictive and without side effects........does it exist???
DLL
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
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