posted
My problem is getting up anywhere from 2:30-4 almost every day, averaging 4-5 hours total a night. Others seem to get up for the day later than I do, but awaken very frequently.
Is this caused by lyme in the brain? Does anyone understand the mechanism that causes sleep disturbance in lyme patients? Maybe that would help us figure out what to do. I do (finally!) have an appt. with a neurologist who specializes in sleep later this month.
btw, I'm 46, and someone (not a lymie) suggested the problem is that we 'women of a certain age' have sleep problems due to hormones (though I've been having progressivley worse sleep problems for about 4 years, and slept great before becoming ill).
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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posted
I have always had sleep problems. However, it had gotten so much worse. It is one of the other separate things I am being treated for. I have gone through sleep study etc. Amazingly, I started sleeping better after I was on a week of Levaqui for bladder infection after I was released from hospital. The sleep problem are returning though.
I wake up frequently. I also eat in my sleep I think that is a separate issue lol.
Posts: 347 | From WV | Registered: Jan 2007
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posted
I recently discovered one reason why my sleep has been bad and getting worse: addiction and withdrawal from benzos, in my case, Klonopin.
I have taken 1-1.5 mg of Klonopin at bedtime for restless legs and insomnia for 12 years. In recent years, my sleep has gotten progressively worse to the point I was waking after an hour or two and usually (but not always) picking up another hour or two sometime during the night. 3-4 hours a night was about it.
I spent 4-1/2 months tapering off Klonopin and have been totally off for 7 weeks now. Withdrawal was not easy and I had a number of virtually sleepless nights during the process, but I am now sleeping better than I have in many years -- sometimes as much as 5 or 6 hours uninterrupted.
While I was trying hard not to increase the amt I was taking, my body had reached tolerance and I was experiencing withdrawal symptoms just by remaining at a level dose. One of the primary withdrawal symptoms with benzos (Klonopin, Xanax, Valium, Ativan) is insomnia. You are more likely to experience withdrawal in between doses on the shorter acting benzos, like Xanax and Ativan.
The same goes for anxiety. My anxiety worsened significantly while on Klonopin. Since it is an anti-anxiety drug, I assumed that meant my anxiety in an unmedicated state would be really bad. What a pleasant surprise to find quite the opposite to be true.
I know many people here use benzos for sleep, anxiety, and general pain management. It's too bad they are such easy drugs to become physically and pyschologically dependent upon and so unpleasant to withdraw from. The most important thing to know if you decide to wean yourself off is to take it VERY SLOW. I probably should have taken twice the time -- 9 months. But I am so glad I am finally off.
Posts: 164 | From USA | Registered: Jul 2005
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I am not so sure it is necessarily hormonal. I am 26 and have severe sleep problems. I've had insomnia since age 14.
Have you ever tried Xyrem? It is supposed to increase deep sleep. I personally have not tried it but have read that it has worked for others.
lesley is totally right about benzo withdrawal. I went through it and it was horrid. But then again I didn't taper slowly enough so I'm sure it would be better with a longer taper.
But my sleep problem persists years after the benzos. I was only on them for less than a year all total (and only in short month long periods not a whole year month after month).
Sleep is a HUGE problem for me. It's probably my worst symptom and definitely my longest lasting (12 years of insomnia - yikes). I'm always tired.
I'm not on Lyme treatment yet. Just started babesia treatment a few months ago.
-catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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Lymies are often magnesium deficient. My NP put me on Perque Mg Guard plus, 2- 6 a day. Supposed to help with my bowels. Also, she said it would help with sleep. It is helping with sleep.
Debbie
Posts: 54 | From Clovis, California | Registered: Nov 2006
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posted
CatWoman, one of the reasons I am seeing the neurologist for sleep is that I asked my NP about xyrem after hearing about it here, and was referred to him. My NP said that it had worked really well for several of my LLMD's patients with persistent sleep problems.
debbiet, I've dosed with magnesium, and it seemed like a lot, but maybe not enough or for long enough? I'm taking so many supplements right now (14), but I'll ask my LLMD about how much mag I could add.
Right now I'm on soma and ambien. I don't think these are benzos (?), but I do know they're not working anymore. I'm concerned about the process of getting off them as I'm afraid of missing any more work than I already am.
I hope the neurologist has some answers. I'd still love to know why we don't sleep!
Here's wishing at least 8 hours and pleasant dreams to all
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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My whole family has lyme; my husband, me and two kids.
Quess what, we all don't sleep. Its crazy. I can fall alseep fast, but then I wake up around 3 or so and can't get back into a deep sleep. My daughter can't go to bed until 12 or later and then finally falls asleep and doesn't want to get up in the morning. But she sleeps so lightly and hears everything. She never gets really good deep sleep.
I would love to know why. Is it the lyme? It has to be.
Lyme4
Posts: 60 | From RI | Registered: Dec 2006
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posted
From what I understand, it's a central nerious system issue. The Lyme invades the CNS and basically causes the body to "forget" how to sleep or be unable to throw the sleep switch.
I'm sure there are more reasons than that, but that's how it feels for me -- like my body has just lost the ability to sleep.
Amitriptylene has helped me a lot with this.
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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posted
Its the cortisol. Just search for cortisol on this site and you'll get plenty of information.
Homeopathic doctors can resolve this.
Ernie Normal Cortisol variation: Cortisol secretions are characterized by a steep increase in the morning, peaking at approximately 8 a.m., followed by a gradual tapering off until about midnight, when circulating levels are at their lowest. Rapid eye movement (REM) sleep occurs primarily when cortisol levels are decreasing, and wakefulness and Stage 1 sleep are associated with increased plasma cortisol concentrations.
With Lyme folks, cortisol peaks midnight to early morning and wakes us up.
Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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Why do you think this is caused by lyme, I mean what about lyme causes the cortisol cycle to change?
My 18 yr old daughter can't sleep either, but since becoming ill with TBIs she has had a monster of a headache, over 1 yr straight now. She thinks if someone could relieve the pain she could sleep. Who knows? At least it wouldn't hurt!
The sleep meds she's tried don't do much either, but then again neither do the migraine meds!
What about the lyme or TBI's that are effecting the lining of her stomach and make it difficult to absorb vitamins and minerals also goes for meds?
MommaK
Posts: 242 | From Mississippi | Registered: Oct 2006
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bettyg
Unregistered
posted
i haven't slept for last 30-35 years..
my 2 overnight sleep studies at local hospital show i have SLEEP APNEA where i stop breathing, etc. each night.
but most importantly, it showed i get NO DELTA 4 SLEEP WHERE BODIES REJUVENATE HEALING INJURIES AND YOU WAKE UP FEELING NON-REFRESHED! finally, i have written proof why i can't sleep, and wake up at a pin drop!
posted
Sleep has definitely been an issue for me. I fall asleep but then wake up in the middle of the night and can't go back to sleep. I do have xanax which helps a bit.
I went to see a nutrionist who ordered some tests. Basically when I woke up in the middle of the night I had to take a urine and saliva sample and send it to the lab. The lab tested for cortisol, melaotonic, epinepherine, and a bunch of other things.
Most of my levels were out of whack. For example, cortisol levels at that time that I took the sample should be less than 1 according to the lab. Mine was 6.6 which is where it should be during the middle of the day.
So, she started me a few days ago on some supplements and I have no idea if these will work but she's hopeful that they will and so am I!
-David
-------------------- Same nightmare, different day! Posts: 401 | From East Coast | Registered: Nov 2005
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posted
I've been reading about low dose naltrexone -- those taking it are reporting sleep regulation. Check out www.ldninfo.com and also a very active yahoo group, [email protected]. I have put in a call to a main doctor working with it in NYC, Dr. Bihari, and he says some Lyme patients are taking it.
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
My homeopathic doc gave me melatonin for sleep, it didn't work at first but as I gradually increased the dose it started helping. My main problem has always been waking up a lot during the night but now, after about 3 months of taking melatonin, I sleep 7 or 8 hours most nights, I don't have to tell you how good that is!!
Melatonin does a lot more than help sleep too, it could be very useful to lots of lymies and you'll find plenty of studies such as this one.....
Melatonin neutralizes neurotoxicity induced by quinolinic acid in brain tissue culture.
Vega-Naredo I, Poeggeler B, Sierra-Sanchez V, Caballero B, Tomas-Zapico C, Alvarez-Garcia O, Tolivia D, Rodriguez-Colunga MJ, Coto-Montes A.
Departamento de Morfologia y Biologia Celular, Facultad de Medicina, Universidad de Oviedo, Oviedo, Asturias, Spain.
Quinolinic acid is a well-known excitotoxin that induces oxidative stress and damage. In the present study, oxidative damage to biomolecules was followed by measuring lipid peroxidation and protein carbonyl formation in rat brain tissue culture over a period of 24 hr of exposure to this prooxidant agent at a concentration of 0.5 mm. Quinolinic acid enhanced lipid peroxidation in an early stage of tissue culture, and protein carbonyl at a later stage. These data confirm and extend previous studies demonstrating that quinolinic acid can induce significant oxidative damage. Melatonin, an antioxidant and neuroprotective agent with multiple actions as a radical scavenger and signaling molecule, completely prevented these prooxidant actions of quinolinic acid at a concentration of 1 mm. Morphological lesions and neurotoxicity induced by quinolinic acid were evaluated by light microscopy. Quinolinic acid produced extensive apoptosisi/necrosis which was significantly attenuated by melatonin. Cotreatment with melatonin exerted a profound protective effect antagonizing the neurotoxicity induced by quinolinic acid. Glutathione reductase and catalase activities were increased by quinolinic acid and these effects were antagonized by melatonin. Furthermore, melatonin induced superoxide dismutase activity. Quinolinic acid and melatonin acted independently and by different mechanisms in modulating antioxidant enzyme activities. Our findings using quinolinic acid and melatonin clearly demonstrate that such changes should always be seen in the context of oxidative neurotoxicity and antioxidant neuroprotection.
PMID: 16150107 [PubMed - in process]=
Posts: 51 | From England | Registered: Oct 2005
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
Elinor said:
"Melatonin does a lot more than help sleep too, it could be very useful to lots of lymies and you'll find plenty of studies such as this one.....
Melatonin neutralizes neurotoxicity induced by quinolinic acid in brain tissue culture."
I used to take melatonin with fairly good results, except that it did make me drowsy during the day. I think it was because I never got out of an adjustment phase with it, somehow.
I keep hearing more and more reports like the one you mention, Elinor, that melatonin may have a deeper action other than inducing sleep.
Thanks for posting that information. Think I will try it again, maybe the timed release one this time.
Claire
[ 10. February 2007, 09:51 AM: Message edited by: clairenotes ]
Posts: 1111 | From Colorado | Registered: Oct 2006
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Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I agree with Ernie to an extent. Our illness is why we can't sleep indirectly. It is related to the problems related to the stress that is brought on by this illness.
Stressors of this kind cause our adrenals to release adrenaline. That is a normal response to any kind of stress really, "Fight or Flight". Only thing is, the stress of Lyme is chronic. Adrenaline makes us wired, paricularly mentally.
Do you wake up in the middle of the night with your brain immediately active, even though you know you are exhausted? That is adrenaline. Do you ever wake up with your heart pounding? I did several times last night, again adrenaline.
I posted a topic about this a couple of weeks ago. It was about dysautonomia and what causes it to happen.
I used to wake like this every single night. It usually happened around 1:00 am and my mind would race until about 5:00 then I would drift off to sleep again, just in time to have to get the kids up.
Now that I am in remission for many years and even 50 when hormones are also supposed to be a problem......I sleep almost all night straight through.
Like Bettyg, I had a sleep study that showed when this was happening that I did not do ANY stage 3 or 4 sleeping, so there was no regeneration or healing. I also did not dream or REM sleep. I spent what little time I thought I was sleeping in twighlight sleep. Gesh, no wonder we feel like walking dead.
Posts: 1251 | From california | Registered: Apr 2005
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posted
More on sleep. Thank goodness you are all here. You are SO wise! I too am concerned about benzos and becoming dependent.
The only thing that has seemed to obviously help so far has been to take .5 mg of Klonopin when I wake at 12:30 pm. This has (for the past two nights) kept me asleep for the rest of the night "til 6:30 am or 6.
However, I have started on Bruhner's Hep C formula because of my compromised liver - no Hep C just a bear of a time detoxifying. It has stuff in it he says can make you sleepy, including Ashwaganda which I started taking more of before I go to bed.
At this point I take 3 timed release melatonin, Stress Arrest from Biogenesis (includes GABA, lithium-very important, 5-Htp, etc.), and the Ashwaganda.
Three resources I can recommend - The Mood Cure - a book with great info on the workings of the brain, mood and sleep - easy to understand, www.adrenalfatigue.org - great info on cortisol, etc. - his book is good too and www.womentowomen.com - good articles on hormones, cortisol, menopause, perimenopause.
Posts: 104 | From connecticut | Registered: Jan 2007
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posted
monkeyshines: What drugs have you taken, specially antibiotics, for treating your lyme or co-infections during the last years? Some act very hard on the GABA receptors of the brain, disrupting them or injuring them what makes almost impossible to sleep decently.
Posts: 94 | From canada | Registered: Nov 2006
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I'm not sure I can even remember everything I've done to date. Between 2002-05: penicillin, cipro, augmentin, levaquin, doxy, cefzil, ketek and 6 months of iv rocephin. During some or all of that time I was also on plaquenil, diflucan, enbrel (biomed arthritis drug), zovirax (anti viral), Para-Factors (artemesia), and had sinus surgery and a tonsillectomy.
05-06: switched from LLMD to naturopath and did mercury amalgam removal and chelation, hormone replacement therapy, cats claw, "Dutch Protocol" homeopathic lyme treatment, cranial sacral therapy, colonics, and many supplements (some for sleep, some for general symptoms)
Present: back to LLMD, and I am (or was) pursuing parasite treatment ('was' because I just had a car accident which was Rx and lack of sleep related, so I'm kind of on hold til I figure out sleep).
For the past four years, I've also been taking ultracet and vicodin for pain. I've also been on gabitril for about the past four months.
For sleep some of the things I've tried are:
Natural Calm (magnesium supplement) melatonin guided imagery meditation eating protein snack before bed soma (still on) ambien (still on; switched to CR recently, but no change) klonopin (started a few weeks ago and stopped after car accident)
These are the things I can remember; I know there have been other things but I'm particularly lyme brained these days.
I also did the wake up and 'donate' saliva and 24-hour urine tests a few years ago that davidx mentioned; I did have abnormal hormonal fluctuations, but not as wildly as my naturopath expected.
I had a sleep study done about 4 years ago, but it was because I lost my sense of taste for six months after the tonsillectomy and LLMD was worried I was having post-op seizures. Sleep wasn't as big a problem then, or at least, the drugs worked, but the results were that I had "sleep disturbance". I'm sure I'm due for another study.
So, it feels like I've tried a lot already, but I know there's got to be an answer!
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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posted
I think it is probably a combination of things that causes the sleep problem. I was only recently diagnosed but have probably had Lyme disease/co-infection since age 12. I'm 26 now. Anyway, sleep is my biggest problem. My bladder is also awful too but sleep is the worst.
monkeyshines: I would be interested to know how the neurologist thing goes. Please keep me posted. I wish you the best of luck. I have heard Xyrem works really well for some people.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
I just realized I guess it goes without saying that the sleep problems are caused by a combination of things.
My cortisol is low due to years of stress and illness. It's highest at night when I'm supposed to be sleeping. An endocrinologist treated me with replacement dose Cortef for several months and my cortisol started going up but then my thyroid started going down. This in combination with the bartonella, Lyme and babesia I am sure are significantly contribbuting to my sleep problems if not causing them entirely.
~catwoman
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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posted
Bump
Posts: 255 | From where we don't have Lyme disease | Registered: Jan 2007
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clairenotes
Frequent Contributor (1K+ posts)
Member # 10392
posted
I came across this in "A Look Beyond Anti-biotics" by Dr. K.
"The insomnia of Lyme disease is often herpes viral in nature (EBV, VZ or HSV I or HSV II). As a diagnostic trial I often use 1000 mg of the medical antiviral drug valtrex at bedtime. If there is a dramatic improvement, herbal antiviral treatment has to be considered for a long time. We have designed an antiviral program for the KMT... Zinc fosters the growth of HSV I and II, and copper and selenium inhibit it."
This is just something else, of many things to consider.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Research "iron sleep".
Posts: 9426 | From Sunshine State | Registered: Mar 2001
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posted
I also have problems with sleep, it's one of my worst symptoms, in fact it was one of my first symptoms after being bitten.
I have tried almost everthing for drugs like ambien, melatonin, restoril, chloral hydrate, and somehting that starts with an L, can't remember.
The ambien would sometimes work, but only at higher doses, and i got in trouble for that! I took elavil and klonopin for a long time, which i eventually weaned off the klonopin, and stopped the elavil due to weight gain.
then switched to low dose remeron and seroquel. My sleep is ok right now, but sometime when i have an antibiotic change it returns.
I did 4 months of bicillin last year and the whole time i had horrible insomnia. My llmd thinks that it's part of a herx for me, but 4 months was too much!
I recently had my cortisol levels checked, so i'll be interested in that. I would like to get of the seroquel because of the possiblity of interacting with certain antibiotics. Insomnia sure is hard to deal with. Dee
Posts: 163 | From maine | Registered: Oct 2003
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posted
I tried ambien and melotonin for a short while, and didn't work.
I tried seroquel, it worked, but I felt drowsy and more lyme headish the next morning, so I gave it up.
I then tried cipro (for my sinusitis) and now I think back, it's very possible that cipro "cured" my insomnia, night sweats and chills because I just stopped cipro for two days and I began to see those symptoms come back (time and experience will tell)...
Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I've always been a bad sleeper.
Last spring and summer my sleep got so bad I was on three different Benzo's at night. I took Chlorazepate (long lasting) first with timed released Melatonan one hour before bedtime then Ativan (medium lasting) and Xanax (short lasting) when I woke up. I was up every hour to hour and a half. I was a real mess.
Then my Phychiatrist and I figured out that the T-3 and Cortisol my "Lyme" dr. had me on was the main culprit. When I got that out of my sytem I was able to quickly wean down to a normal dose for sleeping.
Now I take an Ativan and timed released Melatonan one hour before bedtime and 1/2 of a Xanax when I wake up during the night and that's all I need. I've been using Xanax at night to sleep for years and except for the issues above haven't had to increase it and I also didn't have an issue dropping the dose.
When I had my first few herxes I had major anxiety so I used Xanax during the day, too. I had a couple of bacterial "stealth" infections I was working on too, so my herxes were intense. The Xanax worked wonders.
Posts: 1761 | From USA | Registered: May 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Low dose doxipin helps keep me in deep ream sleep.
It does take an elephant dart to get me to fall asleep. Melatonin in combo with other stuff helps knock me out so I can fall asleep. I usually sleep uninterupted now with the low dose doxipin for 10-12 hours per night. Really need that much to feel at my best. I have to take it by no later than 8:00 so it doesn't lag over into the nest day.
Hope you can get more ZZZZZZZZZZZZZ's
make sure to talk over everything first with your LLMD
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
Adrenal Fatigue, a book by James R. Wilson has a good protocol for supporting the adrenals (and lowering cortisol).
It worked wonders for me when my cortisol was so high I was in constant panic mode.
It also got my breastfeeding baby sleeping five or six hours at a time instead of two, within about three days of starting the protocol.
Highlights are magnesium, calcium, B complex, pantothenic acid, and siberian ginseng.
-------------------- bejoy!
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