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» LymeNet Flash » Questions and Discussion » Medical Questions » Calling all chronic insomniacs

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Author Topic: Calling all chronic insomniacs
CatWoman
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I am hoping to hear from other people with treatment resistant insomnia. I've tried so many things and nothing's worked. I'm wondering if the people who have the worst insomnia are the ones with the most co-infections?

Do you have co-infections? Did you insomnia improve with treatment? I'm just wondering. Been on babesia treatment since November and Bicillin injections since September but my insomnia isn't improving at all. I've made very little progress so far (a little improvement in fatigue but that's it so far).

I've got Lyme, babesia and bartonella.

~catwoman

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sonwithlyme
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My son is 11 years old, diagnosed with Lyme in August 2005, diagnosed with Bartonella in Feb, 2006, current treatment is minocyline, rifampin and biaxin. Trouble getting to sleep then wakes up all through the night. Doctor gave him naproxen to help with the pain in hopes he could sleep through the night, has not helped.

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Robin
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ByronSBell 2007
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I am a chronic insomniac! [dizzy] I have tried alot of natural things and they dont seem to help. I am taking seroquel 25mg and it helps me if I take it about 30min to an hour before bed. I was having to take 50mg now at 25mg so I guess it has improved some. When I am herxing, I can just flat out forget about getting sleep. IMPOSSIBLE! Things that help for rest that have shown a little benefit for me is things like Magnesium supplementation, L-tyrptophan, staying away from any form of sugar before bed including fruits and fruit juices. Hope that helps some...

I got sick with lyme around the same time your son got sick, not very fun being sick through your kid years [shake]

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painted turtle
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Xanax seems to be the only thing that helps me with insomnia.

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www.lymefire.blogspot.com

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monkeyshines
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I don't know if I have coinfections; I test negative, and I don't think I have any symptoms that could not be attributed to lyme.

I finally just started getting close to a decent nights sleep after starting IV rocphin 4 g daily, 7 days a week. The only other thing that changed in the same timeframe is that I stopped working full-time for the first time since I became ill.

So, not sure if it's Rocephin, or not having the stress of getting up to an alarm clock and dragging myself to work sick and tired, or both.

Before this I had tried many things: Ambien and Soma, Klonopin, homeopathic treatments, guided imagery, magnesium, melatonin, and others I can't think of. Until I started sleeping better recently (sometimes up to 7 hours a night!), I was getting 3-4 hours. My problem was staying asleep, not falling asleep.

monkeyshines

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CatWoman
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Thanks for answering. For various reasons I am not willing to take antipsychotics. And I've had no luck with Xanax or the other things mentioned.

~catwoman

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GiGi
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If you can go to sleep okay, but then wake up during the night, check the biological clock I posted a number of times.

If you wake up between 1 - 3 AM - your liver has a problem working through the toxin material. Start supporting the organs as necessary. That's the time the liver is trying to dump! You have to help it, especially if you are on a number of pharma drugs.

Same if you have problems 11 PM to 1 AM -- gallbladder is doing its major work or is trying to do it - support it - and you will start being able to sleep.

Take care.


Liver support: Artichoke, Cholenest, Dandelion, Betasitosterol, 117 Sterol, Liverlife, Livit 1 and Livit 2 is great; every day detox tea for both kidney and liver (to flush kidney and liver). Castor oil packs. There are plenty more if you start reading.

Also include some of the mop-up agents I have been posting. You are releasing dead material and heavy metals (because they are partners to the microbes) and the will keep moving through the system unless you show them the way out with some of the above agents.

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CatWoman
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Thanks. My problem is I can't fall asleep and I can't stay asleep. I don't wake up at one particular time at night it's all throughout the night every half hour.

~catwoman

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kelmo
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My daughter takes 120mg Geodon, 16mg Rozerem, and two Klonipin. That would put an elephent to sleep.
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CatWoman
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It looks like a lot of people are taking antipsychotics for sleep.
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heiwalove
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i am definitely a chronic insomniac. insomnia is one of my few lyme symptoms that still persists, despite otherwise feeling pretty good.

i also have problems with body clock reversal. it's so easy for me to fall into a pattern of staying up all night and sleeping during the day. not healthy at all.

i don't take any prescription sleepaids at the moment. sometimes i take benadryl, which helps occasionally. i also take natural stuff - valerian, hops, skullcap, etc.

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klutzo
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My body clock is definitely off. My PCP says my blood pressure should be highest in the morning, but it is lowest then, but high at night.

I can fall asleep sitting up in bright light in a noisy room during the day, but can't sleep at night in a dark, quiet room without drugs (Clonidine helps me sleep the most).

However, I also agree with Gigi. My liver is a mess because of long-standing gallbladder problems. The two organs are intimately connected. I am awake from 2 am to 4 am every night.

My TCM doc prescribed a drink for my liver, but I can't use it now because the GB problem has caused gastritis, duodenitis and esophagitis. I ahd to add another drug to control this, adding to the problem. I am seeing the surgeon again in 3 days and keeping my fingers crossed that he will finally agree to operate this time.

The liver drink is a combination of 2 oz. unsweetened cranberry juice, 1 Tbsp.lemon juice, 2 oz. apple juice, 1 tsp. apple cider vinegar, a touch of stevia, and 6 oz. purified water. Half of this is to be drunk before each meal. I increased the amounts and mixed up a whole pitcher full at a time and kept it in the refrig.

The TCM doc also told me to eat natural applesauce, and drink small amts. of watered down natural apple juice. She told me to eat a couple slices of beets every two hours. This helps the GB and the liver.

Klutzo

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5dana8
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very low dose doxepin( 25-50mg) has helped alot to help keep me in deep ream sleep. I started out taking only 10 mg. The loading dose for treatment with this drug for depression is something like 150-200 mg. So the 25 to 50 mg is a low dose.

I have to take it before 7:30 the night before so it doesn't lag over into the next day. Have to also take extra fiber ~ it tends to constipate.

Once I fall alseep I can sleep 10-12 hours at a time straight threw. I think it is the doxepin that helps keep me asleep.

Now falling alseep takes an elephant dart.

Some over the counter stuff can help: benedryl, melatonin, sometimes valerian root, a combo of (B6, calcium & mag) & occational tylonal.

The only rx I have taken is 1 mg klonopin. It's addicting so be careful.

hope this helps

make sure to talk over everything first with your LLMD

blessings & hope you can get some zzzzzzzzzzzz's [sleepy]
Dana

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5dana8

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CatWoman
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I can't take any dose of antidepressants as they make me manic. My sleep schedule can be thrown off so easily. Today for example I fell asleep at 6:30 am. My cortisol levels are low and supposedly if you have low cortisol you're more awake at night and wanting to be asleep during the day. The quality of my sleep is poor no matter what time I sleep. I woke up probably 8 times today at least.

I haven't had any luck with benzos and antipsychotics scare me.

~catwoman

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Robin123
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In the fibro support groups I was in, we each had to find what worked for us.

I take 25 mg benedryl and 1/2 mg ativan to go to sleep. I generally sleep through for awhile.

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ByronSBell 2007
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One thing that contributes to our lyme insomnia is our disability to do anything during the day that makes our body tired for sleep at night.... I know whenever I rarely have a decent day and am able to get up and about, I usually sleep alot better that night...
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kam
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On the flip side of the above, I have noticed if I over do it....I can't sleep too.

Taking pills to sleep now, but that is temporary.

Most likely will not work tonight as I had provigil this am.

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kam
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WE just need a thread for Gigi...when we come across something...we need to search her resources first. [Smile]

A GiGi web site with all the trimmings would be great

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CatWoman
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My insomnia seems to be present through everything. Meaning when I was back at school very busy throughout the day I still had insomnia. When I was at summer camp and spent the whole day canoeing & portaging I still had insomnia. And then the times when I was less active I still had insomnia. And now I gotta admit I'm a total shut in and still struggling with insomnia.

It seems no matter what I do or how active I am my brain will just not shut off.

~catwoman

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LisaS
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I am definately a chronic insomniac! Nothing helps. I have anxiety in the day, and at night. Ativan and Klonopan (sp?) just make me even more jittery. I have Lyme, Bart, Erlichea and maybe babs.

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CatWoman
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LisaS,

How do you cope? This is really wearing on my nerves.

~catwoman

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