posted
I am the worse of the worst about waking up in pain, not being able to fall asleep, stay asleep, I get about 2-3 hours (sometimes 4 hours if I am lucky) and this has been going on for over a year. I get 2-3 hours of broken up sleep. It adds to my pain level, my emotional status: i.e. I feel angry, I yell more, cry all of the time and have no hope to even the hope enough to "try" to do small things to improve things in my life.
However, I tried something new the past couple of nights. I wanted to share, but I'm sure it's nothing new to you all, but I just had to share because I haven't slept like this in I can't remember how long really, it just seems so foreign. I'm so excited but paranoid that it won't stay this way.
I have been taking Melatonin 3mg and 1 Kava Kava capsule, and sometimes a Ibuprofin PM or Tylenol PM right before I got to bed. I fall asleep within 5 minutes and have vivid wonderful dreams, wake up, feel happy, not groggy, I don't even get up to pee over and over. I sleep the whole way through.
It's such a blessing. I don't take any other Klonopin or Xanax either. It's just "natural" stuff and it's helping me more than words. I thought natural stuff was a joke but I heard you all mention Melatonin, so I thought, "Why not" and I tried Kava Kava because the guys suggested it, and boy, the 2 together gives me the most beautiful sleep.
I don't know if someone here is going to bash Kava Kava, but since I added that in the mix, it really made it perfect. I couldn't ask for a better solution. And, no more stupid rx drugs for sleep that don't work any way! If Kava Kava is seriously dangerous, I need to know, but if you just don't like it, please don't bust my bubble. Yes, I know you need to make sure that even natural supplements can be bad if mixed with other drugs that warn you about it, but I have looked and couldn't find anything bad...not yet anyway. I will do a double check. Plus, I need to write everything that I've been taking down anyway....for my next daunting appt with a doctor, whenever that is....and when I apply for county insurance. (Which I am dreading btw!)
Anyway, I just wanted to share.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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blaze
Unregistered
posted
My sleep problems match your exactly. I have trouble falling asleep, even more trouble staying asleep, and 4 hours straight of 'light sleep' is a "good" night for me. The usual is more like 1.5 to 2 hours, waking up at cyclical intervals to pee, remembering the whole night - tossing, turning, shifting, adjusting the covers, staring at the increasingly dawn-lit sky.
I tried melatonin - it did nothing for me, and I took several. I haven't tried kava kava.
How do you know it wasn't the Tylenol PM that helped you sleep?
My suggestion - tonight, just take the melatonin and kava kava and then report back.
I've spent so much money on herbs that do nothing that I just can't justify the inclination to go out and buy kava kava now without more info. Plus, many times I've tried a supplement and gotten hopeful, only to have it do nothing the next time it is tried.
To me, turning off all the cell phone and wifi towers would be a lot easier, rather than making chemical adjustment after chemical adjustment in a futile attempt to get the body to do what it once did naturally before the towers.
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posted
No, it's not the Tylenol PM. I've taken that (shame, shame) off and on, mostly on, trying to get sleep for YEARS. Last night was the first night I added that in the mix just to see if it would make it any better.
I hadn't been taking any kind of over the counter sleeping pill in weeks, so that's not it. It has to be the kava kava and the melatonin. I just took the Tylenol PM because I had been waking up feeling "achy" in the middle of the night which makes me usually want to take another pain pill (strong rx pill) which I don't want to do because it makes me run out early.
So, any way, what worked for me, might not work for everyone, but I just wanted to share. That's all. I didn't want to post before I knew it would be (hopefully) a solution worth talking about.
Thanks for listening.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
If you tend to wake up in pain, taking tylenol can help you sleep longer.
I use kava with Excedrin for headaches. Some brands are better than others.
Carol
Posts: 6949 | From Lancaster, PA | Registered: Feb 2004
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posted
Just want to thank you for sharing this! I recently saw a naturopath and she suggested I try melatonin using this kind of pill that slowly releases it all night. I'm going to give it a shot. My insomnia has been really really bad lately. It was actually better for awhile, so I blame the recurrence on either something in the air or this new med I'm taking (IVIG). But maybe it's just the Lyme acting up again? So frustrating not to know. I'm going to try melatonin now though for sure! Thanks!
Ben
Posts: 11 | From Florence, MA | Registered: May 2009
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I tried many different doses of oral melatonin in the past and it did not help me at all, until I got the sublingual tablets that my LLMD recommended.
He told me to start with 1 mg and work up, not exceeding 18 mg. I use 15 mg under my tongue at bedtime.
I use the Source Naturals brand.
It helps me alot, along with my bioidentical hormones.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
Keep us posted, Beautiful Disaster. See what happens after a couple of weeks. My experience has been that some things work great at first, then lose their effectiveness after a few days. Especially in the sleep category.
BTW, if you are taking ibuprofen at bedtime, I hope you are eating something with it. Taking NSAIDS without food is a real risk for developing ulcers somewhere in your GI tract.
There was a lot of concern over the safety of Kava Kava a few years back, but now I can't remember what the controversy was about. You might want to look into it, though.
15 mg. of melatonin, Dekrator? Wow. That's a LOT. Do you wake up feeling hung over or anything?
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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posted
I have tried every herb and medication for sleep none of them worked for long
but what i have actually found to work recently and I dont know how long it will work is charcoal!
there is also a homeopathic by bio e energetics called insomnia relief that works somewhat ok and you dont build tolerance to it
Posts: 187 | From FL | Registered: Nov 2007
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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
Just wanted to make sure: You do not take B-vitamins after 2pm? If I take B-vitamins or coke or coffee after 2 pm I cannot sleep.
Posts: 1834 | From US | Registered: Oct 2008
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Cass A
Frequent Contributor (1K+ posts)
Member # 11134
posted
Wow!!
I'm sooo happy you found a combination that works for you!!!
As for the B vitamins, for me, having them before I go to sleep really helps! Especially B 1. If I can't sleep, taking about 300 mg of B 1 will turn off all the think-think that keeps me awake.
Coke or coffee or black tea in the afternoon or evening--these are sure sleep-stoppers for me also!!
Best,
Cass A
Posts: 1245 | From Thousand Oaks, CA | Registered: Feb 2007
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posted
Melatonin works great for me, but I can't take it because it leaves me feeling very groggy and foggy in the morning. It's so frustrating because it really works well. Glad you found it though.
-trevor
Posts: 59 | From Arizona | Registered: May 2008
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posted
I'm always afraid that when something works, it will stop. I'm paranoid that tonight might be the "night" that I'll go through complete hell again. My insomnia was so bad that I would just lay there and think of ways to end it all, it was making me crazy.
I don't drink coke that much at all, no coffee, and don't take vitamins except for in the am. So, I know nothing like that was the problem.
I usually take a Tylenol PM but occasionally there will be an Ibuprofin PM in there if I've taken a few Tylenol that day anyway.
I do remember drama surrounding Kava Kava, and I can't remember why. It was long before I had Lyme. They used to sell it everywhere like Walmart and CVS but now it's only sold at real vitamin shops.
It's crappy to say that I'd rather take Kava Kava once at night and risk whatever it was they were concerned about at one point and sleep (with my meletonin also, than go through what I went through before, because there are no words to explain the hell that I went through. Nothing was working. Not Ambien, not Tylenol PM alone, nothing. I tried this combo and it worked for me, but hopefully it won't be like other things (they were actual medicines and I developed real tolerance issues) that stopped working.
I'm going to ride this train until it stops. lol. I wake up and I don't feel like crying any more because I only got 2 hours of broken up sleep night after night after night. I have no choice of sleeping in because I have a little one who thinks getting up at 7am is sleeping in.
When he would wake up, I would be so angry because I knew I didn't have a chance to even TRY to fall back asleep. I knew it was time to face that bright sunlight after not sleeping all night. What a horrid feeling. I know many of you know exactly what I'm talking about. Mind feels fragile, skin crawls, light sensitivities are worse, sounds "hurt" more, all of my neuro problems skyrocket...even my neuropathy is worse.
This is currently working for me but like everyone always says, I'm not a doctor and I don't suggest you do it unless you feel like it's right for you or do your own research if you feel that is what you need to do.
But, if your insomnia was as bad as mine, it might be something to keep for nights that you just might snap if you don't sleep that night. It was a miracle for me.
Keeping fingers crossed that it keeps working. And it might be possible that it helped throw my body back into the cycle that it should have been on. It got so off and out of whack that it didn't even know how to sleep or stay asleep anymore because I went so long like that. I can't believe I did it.
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
A friend gave me something while on vacation that worked great for me! They were meltaway tablets that came in a little box... they were called Moon Drops.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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Dekrator .. I thought the limit on Melatonin was 10 mg???
Kava Kava .. interesting addition. I'm sure a Google would shed light on the negatives. I remember something about that as well.
Glad it works for you!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96237 | From Texas | Registered: Feb 2001
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
.[1] Safety concerns have been raised over liver toxicity largely due to the use of stems and leaves by supplement makers, as opposed to solely the root of the plant as dictated by traditional uses.[2][3] Not bashing just making you aware watch liver enzymes or make sure its only from the root not stem leaves.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Takes 2 hours to get to sleep, sleep two hours, takes 2 more hours to get back to sleep. No actual REM resting sleep in there anywhere.
I've tried Tylenol PM, Advil PM, Benadryl, prescription Ambien & Ambien CR, and a bunch of other stuff; same results;
2 hours sleep at max, vivid dreams so real no peaceful sleep.
Just recently been diagnosed with Toxic Mold Poisoning (symptoms similar to LD).
My daughter's Naturopathic Doctor provided a product from Premier Research Labs called
Tranquinol
All natural, no after sleep side-effects, I've been sleeping 6 to 8 hours every night. If I wake up, I take another Tranquinol and go right back to sleep.
ND says no toxic substances in the product, no problem taking more than prescribed, you'll just sleep longer, etc.
Give it a try, it's working for me.
Posts: 681 | From California | Registered: Oct 2005
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posted
Yeah, thanks for reminding me of the Kava thing. I remember a long time ago, when I wasn't sick, reading about it. I went and got the bottle and it said watch for liver issues. It's not worth it for me plus....I'm not sleeping again! I thought it was nice to save the dose of Klonopin that I would take at night and use it during the day because I live in so much burning pain....I need that pain relief during the day because I have to be "there" for my son.
Buuuuuut, my little natural combo stopped working so I feel foolish to have been so excited about it. Natural stuff FOR ME seems to be a waste of money and never works, so I was happy when this seemed to work.
Waaaaaaaaah. I'm back to my 3 hours of sleep, broken up, and about the time I feel like I can fall back asleep...my little one gets up.
I've tried all of the rx drugs too, everything seems to lose effect. Ambien was the biggest joke of them all I think. I will try some of the other suggestions. Not getting sleep makes my pain worse during the day (as if that's really possible).
-------------------- ---Beautiful Disaster--- IgeneX WB: IgM: 18+, 31+, 41+, 58+, IgG: 31++, 39 IND, 41++, 31kda Epitope Test: Positive Labcorp: IgM: 23+, 41+ No LLMD due to money since Sept 2008. Was on Doxy, I.V. Rocephin (30 days), Flagyl. Also dx with Bartonella. Posts: 139 | From United States, East Coast-ish | Registered: Aug 2009
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Truthfinder
Frequent Contributor (1K+ posts)
Member # 8512
posted
BD, don't feel foolish for getting excited about this. I think it's pretty common for the body to get acclimated to stuff.
Besides, if you stop it for awhile, it will probably work again. Maybe eventually you can work out some kind of rotation system.
lymedad, thanks for the tip about Tranquinol - never heard of that one and I thought I'd tried about everything. Nothing seems to keep me asleep for long once I get there.
Tranquinol - Premier Research Labs; 60 caps about $26 (Couldn't find it at Vitacost)
Contents / Ingredients: 2 capsules contain:
Seditol [a proprietary blend of patented extracts*** from Magnolia officinalis (bark) and Ziziphus spinosa (root)] - 366mg
Guaranteed free of: magnesium stearate or other toxic excipients, corn, milk, soy, salt, sugar, wheat, yeast, artificial colors, flavors or preservatives.
-------------------- Tracy .... Prayers for the Lyme Community - every day at 6 p.m. Pacific Time and 9 p.m. Eastern Time � just take a few moments to say a prayer wherever you are�. Posts: 2966 | From Colorado | Registered: Dec 2005
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
Something that works like a charm for me and for others I know is children's dimetapp . You can get a cheap version of it and it clears my stuffed up sinuses and I have sweet dreams with no next day grogginess .
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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