posted
Hi all, I have been having what I assume is Lyme related sleep disturbances. They are changing. Initially, with my first major symptom flareup about amonth ago I started waking up every night at 4:00 am in a state of anxiety and I could not get back to sleep in the first place. Now, I cannot get to sleep. I'll lay there for hours and finally fall asleep around 2/3/4. Once I get there my sleep is troubled and I still often wake up again around 6:00 and have to wrestle to get back. But during that sleep I am dead, no dreams no nothing. It is not refreshing at all.
I realize some of this is actual anxiety (possibly caused by Lyme). I'm going to be asking my PCP for something to help today. But I'd like to here some other's experiences. I have read that sleep troubles are a Lyme symptom.
Also, my sleep troubles are not pain related. I have muscle twitches and they do aggravate me, but I do not think they are what's keeping me up.
Anyone feel like sharing their experiences? Thanks. Be well... Kenny
[ 21. October 2005, 11:04 AM: Message edited by: Kenny from PA ]
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Yes Ken,
Sleep deprivation is one of the lingering symptoms I have with my battle...
This bug seems to keep us that way..some supplements may help you or get some sleep aids from your doc....
He will probably tell you you need an antianxiety medication...however I have been on many that never worked and some had the oppisite effect on me.
I'm presently taking lexapro and at least I don't hit the high-highs and the low-lows...but I only sleep four hours straight thru on my best nights......usually two hours at a time.... This seems to be caused by interference from the bug in our minds ability to transmit signals.....
That's also why you suffer from anxiety and or depression...... There is a cycle some say caused by PTSD in chronically ill people which perpetuates the illness....
Good luck...............hope you get something that works for you...........zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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I get really strange dreams and no consistent sleep including the REM phase.
z-man, also part of the seasonal changes in symptoms as in the other post by Henson. I've been getting the sweats, chills, tingling, a.m. nausea and dizziness. You too?
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
I struggled with sleep problems most of this year.
Previously I had poor quality sleep so while I was in bed and sleeping I woke tired. This year I would go to sleep and then wake up in the 1-3am range and not get back to sleep. I had some success with benedryl, 25mg, if I took it by 2am so I had 4 hours before I had to get up.
The best solution I have found is 1/2 mg of meletonin when I wake up during the night. I keep it by the bed. I usually go back to sleep shortly afterward and sleep well the rest of the night. I'm starting to sleep thru the night more nights now.
Sometimes nothing works for days! Last month I blamed it on the full moon, but last night I slept half the evening on the couch and all night in my bed. go figure.
Ambien din't work well for me. I woke after a short time, disoriented and couldn't go back to sleep. It works well for my son.
You will find it is trial and error and what works today might not next week.
I have experienced exactly what you mentioned - just being completely unable to sleep until the wee hours of the morning, at which point I would almost fall unconscious and wake up what felt like only moments later.
My LLNP says that this is not regular insomnia, but more a direct result of spirochete involvement in the central nervous system causing us to be actually physically unable to fall asleep.
The foot pads helped a bit with this, and though I didn't want to, I am taking Lexapro and Amytrypteline and it's totally working for me, even though I have bizarre dreams.
Over the past year or so I had never been able to fall asleep before 4 AM. Such a bummer. I do have to take 4 of the amytryptelines though for it to work. Luckilly they are non-narcotic.
I hope you can get some good sleep . . . good luck!
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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bettyg
Unregistered
posted
Kenny, I know this subject only too well; 30+ years of it!
Someone suggested having a sleep study done to see if I have apnea/stopping breathing while sleeping. I did; YES, APNEA I HAVE.
I tried 2 c-pap machines to help me breath. One a friend gave me of her deceased husbands. Other had a HUMIDIFIER which felt like 32 degree temp water being thrown in my face. Later we tested, it was 82 temp water but to me...was bone chilling! I gave up on c-pap for now in spite of 2 separate full facial masks.
This week I sought drs. help again; he put me on lunestar I THINK; can't remember & bottle is in another room. 1st night I got some sleep...felt relaxed; last 3 nights ... NO SLEEP & WALKING HALLWAYS ALL NIGHT LONG.
Wish I could get this bugger solved! I'm so fatigued!
I've had just about every sleep disturbance you can have.
There doesn't seem to be a cycle or anything like that.
I've had difficulty falling asleep, waking and not returning to sleep, waking multiple times during the night and waking a couple of hours too early.
The really funny thing about it is that I can always sleep extremely well during the day.
I've tried Ambien and Lunesta with negative results.
With the Ambien, I was sleepy all day and then woke up around 5 or 6pm and was wide awake until I took another one.
I took Lunesta twice and the days after I took it had car accidents. I can't say for sure if it was caused by the Lunesta or not but I'm not trying that again. I also had trouble making decisions.
I have used Meletonin and it has worked in the past. I forgot about it and now that I've remembered it, I'll try it again.
The other thing that I've used that works very well is Clonazepam (Clonapin). When I know I have to wake up early I take 1/2 and when I know I can sleep in I take a whole one.
I think the pills are .5mg. I don't take it all the time because it's one of those things where the effectiveness decreases with use. I take it to get over the humps. Also, when I take 1/2, I don't always sleep through the night.
Well...walked away from this post and now I'm back. I don't think I had anything else to say.
Take care,
Corgilla
-------------------- "I'll never forget good old Whatsisname." Posts: 694 | From PA | Registered: Jun 2003
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
I suffer the same Tony...
Sleep is broken up by intervals of about 3 hours and never feel rested . always feel tired and dragged out like someone was dancing on my head all night..
wake up then fight to go back to sleep and sometimes never win the fight..
both my kids suffer the same thing and school was impossible to get them in .. I finally had to withdraw and home school them then went to cyber schooling cause it was too much of a drain my my health,, cause I hated fighting with the local school system to explain that I, myself, wasn't rested enough in the AM to feel capable of driving them in when they missed the bus..At the time the Neruo thought I was suffering from nocturnal siezures since I would awaken in the moring with my whole body shaking... and be disoriented...
try telling the school board this when they are telling you that it is a law that your children attend school!
I swear health is taking a back seat to life in general in this fast paced world we live in.. Im just so tired of fighting but if I give up they all win... and I loose! my life...
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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I think we may have been bitten by the same tick. From your previous posts to this one. All of my symptoms are identical.
Have you had a brain MRI ? Mine shows many lesions. I also have neuropathy in my arms?
Having said all that I am 8 months into treatment and things are improving slowly. I am no longer dizzy and have stopped dropping things.
My fasciculations are nothing like they used to be. They still catch me off guard and can be unerving at times.
My sleep has improved with Klonipin .25mg however some nights it takes .50. I have noticed when I have a headache and take tylenol PM with the .25 Klonopin I get me best sleep. It can last up to 10 hours. When I started treatment I was lucky to get 3-4 hours.
I do still wake anxious and feel as though my left has been turned upside down, At times I fell as though I am in a free fall.
I have also started Physical therapy which is helping with my strength. From Dr. D says it helps to get blood flow into the muscles and helping abx do their job. It is often very painful for days after but seems to be getting better. Talk about PTSD the pain is much like the herxing pain I withstood early in treatment. Body ached from head to toe. I often ask my self why am I doing this to myself, and paying for it.
If I could now just have my brain back I think I might be all set. Hopefully that will come with time as well.
Take care and peace.
Posts: 221 | From S. Florida/Massachusetts | Registered: Mar 2005
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posted
sleep, what sleep, I don'tneed any stinking sleep!!! LOL. I go through periods of waking a 2 am sharp and then up for 2 to 3 hours - or then not any sleep for 3 days, then crash for 2. this happend when the ruero lyme is kicking in. Exedrin PM helps a times. Flexeril also has helped but when the ruero side kicks in I still wake up cloudly with my nervious system in hyper drive.
Posts: 582 | From milwaukee wi | Registered: May 2005
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Foggy
Frequent Contributor (1K+ posts)
Member # 1584
posted
I kept waking up at night and couldn't get back to sleep. Had a sleep test and no Apnea but an inexplicable poor quality of sleep. Ambien and lunesta helped but didnt correct the problem.
According to my LLMD, it was adrenal fatigue, not Lyme or Babs causing this problem. Since starting Cortef, I sleep the entire night.
Posts: 2451 | From Lyme Central | Registered: Aug 2001
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My sleep seems to be directly related to how much vitamin B I am getting. If nothing else works, 50 mg. of Trazodone (Generic for the antidepresant Desyrel) will reliably induce about eight hours of sleep. David
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
I've been on Trazodone for a year now. Have slept consistantly better than I have slept for years. At least 8 hours nightly. Yes, sometimes I wake up around 4 a.m., but usually fall asleep again.
I fought going on something like that for quite awhile and I don't want to stay on it, but it's improved quality of life.
Sleep deprivation increases symptoms.
Bug
-------------------- Every experience God gives us, every person He puts in our lives, is the perfect preparation for a future only He can see....Corrie Ten Boom Posts: 343 | From Northcentral Iowa | Registered: May 2005
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I've had sleep disturbances for many years. Sometimes I just can't fall asleep other times, when I can fall asleep, I'll wake up at 2:00 and stay up until about 4:00.
When I first started taking Magnesium supplements I noticed an immediate improvement in sleep. That didn't last, though, and now I'm back to the old pattern.
As noted in other posts, I usually feel tired during the day and am able to sleep then.
I went for years with dreamless sleep which indicated to me that I was never getting any restorative sleep.
I haven't tried anything for sleep but I think I will try Melatonin and see if it helps.
Posts: 105 | From CA | Registered: Apr 2005
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posted
Hi all, Thanks for your input. I tired Lunesta last night for the first time. I have never used a sleep aid before this past month or so (I never needed one until now). I slept from just before 12 until about 5:30 and was able to drift back until almost 8. I can't really look a this as a long term solution, but it sure felt good to get even a little sleep. Best regards to all, Kenny
Posts: 76 | From South Eastern PA | Registered: Sep 2005
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posted
I too wake up every night around 3 or 4 am. I recently had hormone testing done and have found that my vortisol levels are abnormally high at all times of the day. I read some about cortisol and how it effects us long term when high. Sleep problems. So my suggestion --get your hormones checked. Some of the lyme symptoms that I have not been able to get rid of may actually be due to the cortisol problems. Now the question is --Are those levels high because of the lyme or because of the stress in my life or even the stress created by knowing y9u have lyme?
Posts: 547 | From Maryland | Registered: Mar 2005
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posted
I also think that the compounds/polymers in the abx and other medications we take cause sleep disturbance, much like if you drink to much or take cough medicine.
You'd get a few hours rest, then wake up or have some odd dreams inbetween.
Don't know what you can do to avoid it. I was mostly kept awake with pain and numbness. Having weird dreams is almost a relief.
-------------------- Lymester Posts: 519 | From CT | Registered: Jun 2004
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi all
I have (had) disturbed I would rock and roll like Elvis I used to have night sweats really bad-20 years Felt like I ran 8 miles every night- perty much zero sleep
I started treatment for Babs -Mepron-Biaxin-Doxi 3 days later the sweats almost completly gone
Now 2 months into treatment
Sweats still gone- I have slept much better when I do get to sleep- but I still have some insomina but it seams to be getting better too--
I have also had some dreams- so I am getting some deep sleep-- -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
Night sweats, not falling asleep for hours, waking about every half hour, floating feeling, electrical feeling through head, jerks that go clear body, flashing lights when eyes closed, night mares all night, waking and having such severe rushing feelings through body that I cant go back to sleep, waking with anxiety attacks, ect.,ect.,ect. Need I say more. Good luck and good health. Angie
Posts: 19 | From Washington | Registered: Oct 2005
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Monica
Frequent Contributor (1K+ posts)
Member # 224
posted
I did not have sleep disturbances despite being sick for years, until this year when I started intensive LD treatment.
Only sleep a couple of hours at a time -- three max. I ALWAYS have to get up to go to the bathroom.
Sometimes I don't even feel the urge but get a thigh cramp on my right side. My LLMD agrees it's "very weird."
Posts: 1757 | From Somerset County, NJ | Registered: Oct 2000
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posted
I have no trouble going to sleep between 9 and 10:00 pm, but wake up anywhere between 1:30 and 4:00 am every day. No matter what I take, I've tried everything.
24/7 I have this weird all over tension/electrical feeling that keeps me from being able to go back to sleep, or relax in general. I think my thyroid is out of whack, I started taking armour thyroid a week ago so hopefully will know in a couple of weeks if it helps my sleeping disorder/tension.
Posts: 449 | From Vermont | Registered: Nov 2004
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Areneli
Frequent Contributor (1K+ posts)
Member # 6740
posted
Some people sleep better after Questran treatment.
Posts: 1538 | From Planet Earth | Registered: Jan 2005
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posted
I can only sleep a few hours at a time also....The stick people[lol],awake me.My muscles twitch so much during sleep it feels like people are poking me with sticks.I also have nitemares
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
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posted
Sleep? Yeah...I vaguely remember doing that in the early 1990s. Now the 10+ pills I throw down my throat at night sometimes will achieve drowsiness. No sleep.
Posts: 393 | From Washington, DC | Registered: Jun 2005
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