LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » Sleep!!!

 - UBBFriend: Email this page to someone!    
Author Topic: Sleep!!!
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hey guys and gals,

I can't sleep. I'm realizing this is probably preventing me from getting better.

I take neurontin, melatonin, zzzquill, and lavender essential oil (topically). I'm so drugged I can't walk to the bathroom without holding onto something sometimes. You'd think I'd sleep, but no.

With this combo I get 4, or maybe 6, hours of sleep a night. Without the zzzquill I get 2 to 4 hours of sleep every night.

Is there any hope? Maybe I just need to detox or something. When I first started amoxil 3 weeks ago I was sleeping wonderfully. Not anymore. I don't understand this disease at all.

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Are you sure the lavender is OK for you? I'm sensitive to salicylates and I know it would keep me awake.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
I just started the lavender a few days ago. It seems to help a little, but maybe not. I added it because the other three weren't knocking me out. Maybe I should stop using it though.

I started with just neurontin, then added melatonin later, and then (since those weren't doing the trick) added the zzzquill. The zzzquill gave me an extra hour or two of sleep, but still not enough. ):

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Come to think of it, I really have been feeing worse since the lavender. Not sure if it's a coincidence or not. But still, the other three aren't helping enough either.
Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
HW88
LymeNet Contributor
Member # 48309

Icon 1 posted      Profile for HW88     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't have anything helpful except I totally understand. Sleep is so important, yet so hard to get.

I'm seeing a sleep psychologist working on sleep behavior. Not sure if it's helping or not, but I'm giving everything my best effort.

Do you use liquid melatonin? I've heard it is a bit better.

Posts: 798 | From Cincinnati, OH | Registered: Jul 2016  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks HW. (: Nice to have people who understand!

I use a melatonin tablet that dissolves in your mouth. It seems to work good like that. I feel it kick in when I take it, it just doesn't knock me out though. I might try the liquid though.

[ 08-12-2016, 02:31 PM: Message edited by: SickSam ]

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started by taking 25mg benadryl to get to sleep, and now take 50mg. It works for me. We're all different in what works for us.
Posts: 13171 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
tulips
LymeNet Contributor
Member # 44773

Icon 1 posted      Profile for tulips     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have the same problem. I'm now taking Melatonin ND plus Be Gone Insomnia homeopathic, Hylands Calms Forte and Sleep Soundly liquid Melatonin and that gives me 2-3 hours of sleep.
Posts: 653 | From Northern Virginia | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Zzzquill is actually just liquid Benadryl (I get the alcohol-free kind). I'm taking 25mg now, and I don't think upping it would be a very good idea since I already can't walk straight on it. I'd definitely try upping it if I wasn't on all the other stuff.

Tulips, sorry for your lack of sleep too. [Frown] it's crazy. I'm so much sicker when I get less sleep.

I do have a lunesta prescription, but that one scares the bejeebers out of me. Never tried if, but I haven't heard too much good about it...

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Robin123
Moderator
Member # 9197

Icon 1 posted      Profile for Robin123     Send New Private Message       Edit/Delete Post   Reply With Quote 
There's a sleep summit on now - www.sleepsuccesssummit.com - no idea whether it'll be helpful for us, just letting you know - 4-6 experts per day speaking on the topic.
Posts: 13171 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lunesta did not work as well for me as the Ambien.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
bluelyme
Frequent Contributor (1K+ posts)
Member # 47170

Icon 1 posted      Profile for bluelyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sorry sam , My doc said melatonin is really neuroprotective ...like 12 x antioxidant of vit c ...he wants me up to 20mg a nite ..10 is groggy foggy city..

.i have a supp my nurse gave is called pheylbut .i have taken 1/2s when im on the juice (rocephin). It knocks me out ..I know our hpa axis is outbof wack and my cortisol seems to be reversed ....

sometimes a 1/4a zannie is what i need but it slows my ticker some ...using inositol ,lith orate and lots of holy basil ...earplugs and light block help some too...

--------------------
Blue

Posts: 1539 | From southwest | Registered: Dec 2015  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Robin, just listened to one of the sleep summit videos. It was really interesting, mostly about essential oils. Thanks for the tip! Definitely some useful info there.

Lymetoo, I've read a few others who said the same thing. Maybe I should ask for Ambien if all else fails.

Blue, good info, thanks! My cortisol is always way too high. Im sure it's contributing to my sleep problem. I got my midline put in today and I'm supposed to start Primaxin tomorrow. We'll see what that does to my sleep.

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581

Icon 1 posted      Profile for WPinVA     Send New Private Message       Edit/Delete Post   Reply With Quote 
I couldn't sleep until I did an Adrenal Recovery Program.

Also, during that time, my doctor gave me Flexeril. It is a muscle relaxer but also had the side benefit of promoting sleep.

I also read something that helped me a lot: When you are lying there at night getting really stressed and worried about not sleeping, tell yourself: "I have had sleepless nights before and I have managed. I will manage again."

Obviously not the whole fix, but this helped me so much. I used to lie there at night worrying about not sleeping and then of course that becomes a vicious cycle. So changing the message has helped me a lot.

Posts: 1737 | From Virginia | Registered: Aug 2011  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
WP, that's exactly what I've resorted to doing: telling myself that it'll be ok and that it's happened before. But it's taking a serious toll on me now. I've tried flexeril and zanaflezx. I had a bad reaction so I stopped trying those.

It's crazy, I actually slept for a few nights a few weeks ago and my Lyme symptoms started getting better. I could see clearly! If I can sleep maybe I can actually heal.

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
paleogal
LymeNet Contributor
Member # 45991

Icon 1 posted      Profile for paleogal     Send New Private Message       Edit/Delete Post   Reply With Quote 
I started to be able to stay asleep for ~5 hours taking the Herb Pharm Relaxing Sleep blend.

I can't take melatonin anymore because it gives me headaches - and 5-HTP (in a lot of sleep blends) gives me insomnia.

And, believe it or not, chamomile tea has been helpful, unless I drink too much and have to pee.

My main problem is *staying* sleep though, rather than falling asleep, so not sure any of these will help you. Still haven't found anything to get more than 6 hours a night regularly.

Posts: 243 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
tulips
LymeNet Contributor
Member # 44773

Icon 1 posted      Profile for tulips     Send New Private Message       Edit/Delete Post   Reply With Quote 
Paleogal - Do you use the Herb Pharm Relaxing Sleep Blend with Valerian?
Posts: 653 | From Northern Virginia | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
paleogal
LymeNet Contributor
Member # 45991

Icon 1 posted      Profile for paleogal     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, that's the one I use - I get it at Amazon or iHerb.
Posts: 243 | From Southern Arizona | Registered: Jun 2015  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
Thanks for the tip paleogal! I have trouble with both falling and staying asleep, so maybe it could help me too.

I think I'm going to start my testosterone replacement therapy and see what happens to my sleep on that. I've heard some say that it's helpful, so I'm hopeful.

Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Don't forget that fluoroquinolones cause insomnia in many people.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 96239 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
SickSam
LymeNet Contributor
Member # 45330

Icon 1 posted      Profile for SickSam     Send New Private Message       Edit/Delete Post   Reply With Quote 
I thought of that too, but actually my insomnia is a LOT worse when I stop Levaquin. It's definitely the infection for me, but maybe levaquin is giving me a degree of insomnia too that isn't quite as bad as the infection's insomnia. I sure wish I could find something other than Levquin that worked.
Posts: 748 | From Texas | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
shoeless joe
LymeNet Contributor
Member # 45835

Icon 1 posted      Profile for shoeless joe     Send New Private Message       Edit/Delete Post   Reply With Quote 
I use 5htp (now brand),l theanine,melatonin slow release and also .05 ativan.

Lay off of any artificial sugars, they give me insomnia and severe nightmares.

I bet your GI tract is messed up.

Posts: 227 | From fairhaven ma | Registered: May 2015  |  IP: Logged | Report this post to a Moderator
Judie
Frequent Contributor (1K+ posts)
Member # 38323

Icon 1 posted      Profile for Judie     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by Lymetoo:
Don't forget that fluoroquinolones cause insomnia in many people.

Exactly, effects can happen when you discontinue the drug, not necessarily when you take it.

My body was so fatigued when I was on it, it was when I stopped levaquin that the insomnia and nightmares went crazy.

Posts: 2839 | From California | Registered: Jul 2012  |  IP: Logged | Report this post to a Moderator
dal123
LymeNet Contributor
Member # 6313

Icon 1 posted      Profile for dal123     Send New Private Message       Edit/Delete Post   Reply With Quote 
SickSam - Are you male or female?
Posts: 532 | From Texas | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Pam08
LymeNet Contributor
Member # 19203

Icon 1 posted      Profile for Pam08     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have to say that acupuncture did wonders for my sleep which I wasn't expecting at all. It may have even been from the first appointment (if not the very first one it was definitely within the first few appointments). I went once a week for a year. Unfortunately it was just too expensive for me to continue.

My sleep problems aren't as bad as yours though so I don't know if it would help you or not. Usually I tend to get a full nights sleep in but it is fractioned. Sometimes I have trouble with both falling asleep and staying asleep but most of the time staying asleep is the problem for me.

Usually I will sleep for about 4 hours and then I wake up and can't get back to sleep for up to 3 hours. Then I will fall back to sleep again until I am ready to wake up. Sometimes I wake up multiple times and have trouble getting back to sleep. And other times I just don't sleep well the whole night.

Anyhow...I am so sorry that you are having such a hard time. I know that sleep (or lack there of) has a big impact on how I feel so I hope that you find something that helps you.

--------------------
Sick since 10/2001. Tested CDC positive for Lyme 10/2008 through Quest and Igenex. Started treatment 1/2009 with LLMD. Lyme, Erichilosis, Chlamydophila Pneumoniae, Q Fever, Strep Syndrome and probably a few others I am forgetting.

Posts: 451 | From Virginia | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
tulips
LymeNet Contributor
Member # 44773

Icon 1 posted      Profile for tulips     Send New Private Message       Edit/Delete Post   Reply With Quote 
I read that a Magnesium deficiency causes insomnia as well as a lot of other problems and that Magnesium Oxide goes right through you so I'm trying Magnesium Citrate - am trying Doctor's Best 100% Chelated Magnesium and if that doesn't work - Superior Labs Magnesium Citrate 100% Pure - and I stumbled across a sleep aide

which had really good feedback - Driftoff. It will take some time to see if this is effective. Just thought I'd put this out there in case anyone wants to research it and/or try it.

Posts: 653 | From Northern Virginia | Registered: Oct 2014  |  IP: Logged | Report this post to a Moderator
Jubilee
Member
Member # 30343

Icon 1 posted      Profile for Jubilee     Send New Private Message       Edit/Delete Post   Reply With Quote 
My doctor recommended a supplement called Phenibut, and it has worked better than anything else I have tried (most of the stuff mentioned above).

It can be very expensive as capsules, but I found a source that is much less expensive as a powder, and I am grateful. I get it from Liftmode.

Like many sleep aides, it will work better if I take a break from it. Sometimes I do, and sometimes I don't. If I do, then I take other somewhat helpful things like melatonin, theanine, and valerian.

Getting toxins down through a Swedish sauna helps. And being careful to avoid allergenic foods that cause my pulse to go up is also helpful.

Posts: 89 | From USA | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
Jubilee
Member
Member # 30343

Icon 1 posted      Profile for Jubilee     Send New Private Message       Edit/Delete Post   Reply With Quote 
Sam, phenibut makes a huge difference in the quality and quantity of my sleep. I am more likely to wake up and feel like I slept, not just that I was lying down. My thinking, problem solving, and memory are better the next day.

I hope you find all the answers for which you are looking.

Posts: 89 | From USA | Registered: Jan 2011  |  IP: Logged | Report this post to a Moderator
Jordana
Frequent Contributor (1K+ posts)
Member # 45305

Icon 1 posted      Profile for Jordana     Send New Private Message       Edit/Delete Post   Reply With Quote 
There are two reasons a person can't sleep when they're on so many sedatives.

One is, their hormones are way off.

Two: Inflammatory cytokines.

For your adrenals you could try ashwagandha and/or rhodiola.

For the cytokines...we're always in some kind of cytokine storm. Buhner has *fantastic* information on herbs that can help and I couldn't get started on all the different cytokines and what herbs will help. If you check out any of his books you'll get an idea.

Japanese knotweed is a big one (resveretrol)

In addition I am personally taking cordyceps, houttuynia. milk thistle, NAC, ashwagandha and salvia, all for the cytokines.

I do have sleep reversal sometimes but lately I've been ready to go down at around 11 PM. I sleep about 12 hours at a stretch so still not normal, but better than the one where you're awake for 48 hours.

Posts: 2057 | From Florida | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
randibear
Honored Contributor (10K+ posts)
Member # 11290

Icon 1 posted      Profile for randibear     Send New Private Message       Edit/Delete Post   Reply With Quote 
I took .5 of ativan and 10 of elavil to sleep. I'm having extremely dry eyes.

now I'm trying to stop. not easy. the insomnia is a killer.

--------------------
do not look back when the only course is forward

Posts: 12262 | From texas | Registered: Mar 2007  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code� is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.