richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Does anyone else feel like they can barely make it through the day because they can't sleep no matter what!
No matter when I go to sleep, I can't make it more than 2-4 hours before I am wide awake for the night. It is a living hell! I know Dr. B says you will never get better if you get behind on sleep. Well, I am about as far behind as one can be.
****es me off, because I try! I go to bed early, take sleep aid supplements, even try over the counter sleep aids, but nothing! I can tak 4-5 Sominex and it does nothing other than let me sleep 2-3 hours.
Rich
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
| IP: Logged |
posted
Rich, my hubby is going through the same problem.. sleep...no matter when he goes up to bed...its never longer the 3 sometimes 4 hours...and we have tried everything...yet another side effect to this nasty disease...take care and hang in...Madge
-------------------- madgen Posts: 342 | From newjersey | Registered: Oct 2007
| IP: Logged |
posted
Not sleeping is torture. I went through it bad at times.
I was having the problem of waking up the same time every night: 2:00 am. In Chinese medicine each organ goes through a recharge state at certain times of the day and that if I was waking up at the same time every night, it was related to a particular organ. For me it was liver.
Here is a link to something on that theory, not by my chiropractor, by someone else:
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
richedie, I have suffered with insomnia the whole time I've been ill; almost 4 years. What a horrid experience!
3 maybe 4 hours a night of sleep. Tried every sleep aid. I now use Ambien and Xanax and I can sleep 5 or 6 hours. Even with Ambien, I wake up after 3 hours of sleep, but usually can go back to sleep with another few hours. Its still not nearly enough.
Its an awful problem! I so feel what you are going through.
I do notice that if I stay away from any and all caffeine and take magnesium a few hours before bedtime, it helps a little.
Its a catch 22.....you need to sleep to get well and you can't sleep because your sick. So frustrating!
Posts: 4035 | From Mississippi | Registered: Jul 2008
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sleep has been a major issue for me and other members of my family who are sick.
Over the years I've had some alternating problems such as waking up every few hours all night long or not being able to sleep more than a few hours and no dreaming which may indicate very little REM sleep. My brother and his son get their sleep hours turned around so that they are sleeping during the day and awake all night.
Turns out that 3 out of 5 of us have sleep apnea and another one has a problem with not getting enough oxygen during the night. Treatment for sleep apnea helped somewhat. I started dreaming again and was a little less likely to wake up constantly during the night.
I think anyone who can't sleep needs to have a sleep study to rule out any serious sleep disorders. Sleep apnea can be deadly if left untreated.
Another thing that has helped many in my family is dealing with methylation cycle issues. Just adding the active form of folate has helped every single person in my family sleep better. If you do have a problem with methylation and you start supplementing with the active form of folate (I use folapro by Metagenics) you must be careful because you can start to purge heavy metals and other toxins so you need to have things on board to mop up toxins.
I read in the KPU information that sleep and turning your hours around (sleeping during the day and awake at night) can be a symptom.
Not being able to sleep is miserable. Hope you get some answers soon.
posted
I did the same thing for a few years. I didn't want to take sleeping pills because I was afraid I'd get addicted. I finally asked my Dr. for ambien. I take one at bedtime and when I wake 4 to 5 hrs later I take 1/2 tab. At this point I don't give a #%&* if I'm addicted or not. Could be worse. I sleep. When I feel better I'll deal with the ambien. Wish I would have asked for it a couple years earlier.
I did have a sleep study done and do have sleep apnea and use c-pap but made no difference. I still use the ambien.
Posts: 383 | From Ar | Registered: May 2007
| IP: Logged |
posted
I realize you've most likely tried this but sometimes a sleep mask, a couple tylenol PM (or anything with the sleep aid in it) AND "white noise."
There are several "white noise" machines on the market and many people find them helpful.
Posts: 212 | From Pennsylvania, USA | Registered: Jul 2009
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
nil - sorry the cpap hasn't helped. I don't know what kind of machine you are using but I didn't sleep well with a cpap. I needed an apap. It adjusts pressure to increase when you need it and decrease when you don't. I find it quieter and I sleep a lot better with it than with the cpap.
You are probably using a humidifier but if not, that helps a lot too.
Terry I'm not a doctor
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I just read in the Insights To Lyme Treatment book that making sure that inflammation is controlled will make a big difference in ability to sleep. I find that it does for me.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
When I was at my sickest, I had to take Lunesta AND Lyrica. Lyrica will help you get deep sleep and stay asleep.
Once I got better, I took my time weaning off them .... it took six months.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I might ask my doc for Lyrica. We have a "white noise" machine, yes.
I have tried everything save prescription drugs. I am going to ask for Lyrica and hope it helps with nerve pain and sleep.
Why does a humidifier help? I will try it.
The worst part of not sleeping is the nausea. When I don't sleep, I am terible nauseous!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
| IP: Logged |
posted
Have you tried sleep in those 2-4 hours intervals? Kinda similar thing sometimes happened to me, so I was coming from work - fall asleep for 2-4 hours (8-12pm), then awake for a few hours (12-4pm ,) then sleep again (4-8 pm)
Posts: 856 | From MA | Registered: Jul 2009
| IP: Logged |
WildCondor
Unregistered
posted
Richie
I would try something other than sominex. I am pretty sure that is the same thing as benedryl (diphendydramine) and it can be stimulating instead of sleep inducing. I would stay away from anti-histamines..and try melatonin or a serious sleep drug or maybe some xanax. Ask your LLMD for help sleeping!! Try ear plugs and an eye mask and a hot bath before bed with some milk..and some melatonin...if that fails get some self hypnosis tapes that guide you to sleep, works awesome.
IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Sorry I didn't make it clear Rich - the humidifier is for the cpap/apap machine because it tends to dry one out.
Rich - Do you use a cpap or did your sleep study show no sleep apnea?
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
posted
You can get melatonin over the counter, but it's not as powerful as prescription sleep aids.
It's a big help for me.
Posts: 98 | From Maine | Registered: Jul 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
I take Trazodone (a prescription med) plus several supplements and I still don't sleep very well.
A couple of weeks ago I started taking many of the supplements described in Dr. Singleton's book, "The Lyme Disease Soultion".
I think they might be helping a little.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
Siciliano
Frequent Contributor (1K+ posts)
Member # 15920
posted
I agree with Terry--you have to calm the inflammation down in order for sleep.
You have to go through the experimenting with sleeping presciption meds. Since everyone is different you have to find which one works best for you.
Have your Dr. give you one and give it not more than 5 days if it does not help then have your Dr. give you a different one and do that no more than 5 days......you will eventually find the one or combination of two that works for you.
I had this exact same thing happen to me and I slept one or two hours and up again. It was terrible and I really feel for you. So it took me months to find what worked for me and now I have no trouble at all--I found taking lunesta 3mg with one 10mg of flexeril was the magic combination for me.
Good luck and please talk with your Dr. about this because sleep is VITAL for us suffering with lyme. You both need to try the different sleep meds and I know you will find the magic combination that will work for you.
-------------------- I'm sorry but I am no longer accepting any private messages due to my own battle with lyme. Posts: 3897 | From New Hampshire | Registered: Jun 2008
| IP: Logged |
posted
Melatonin works somewhat for my daughter
Posts: 21 | From NJ | Registered: Mar 2008
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I used a series of essential oils to break the no sleep cycle. Got me off Ambien the very first night.
Another very powerful tool (that also helps with anxiety, pain, neuro issues) is Micro Current Therapy.
PM me if you want more info.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
posted
Lunesta does the trick for me. It helps if I take Magnesium, too, and avoid heavy meals later in the evening.
-------------------- dx: MS in 1998 2007 - Lyme suspected 2009 - Positive Lyme, MS worse. Now: Copaxone shots for MS gall bladder out 7/09 Ceftin, Zith, Septra LDN Acyclovir Monolaurin, DHEA, Pregnonelon, Curcumin Posts: 243 | From New Mexico | Registered: Feb 2007
| IP: Logged |
posted
i've tried them all never more than 2-3 hrs of sleep dr. put me on trazadone 3 wks ago most nights staying asleep now for 6 hours straight and i'm not so worried about the dependancy issue w/it.
Posts: 146 | From Vancouver, BC | Registered: Dec 2009
| IP: Logged |
posted
i take restoril 30mg, now i started taken magnisium and i wake up to soon, i will stop the mag., i can sleep till 2 in the afternoon on restoril
cfs, hhv6, mycobacterium, hsv1, cmv, pirovirus, and Epstein Barr virus.... digestive system
GOD GIVE IT, AND GOD CAN TAKE IT AWAY Posts: 655 | From new york | Registered: Dec 2009
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
Well, I ended up sleeping 12 hours that day and night to make up for it....and then 8 hours the following.
It helps to go to bed earlier.
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
| IP: Logged |
posted
Sympathies... i too have suffered sleep issues - max, two-four hours a sleep cycle - for decades. It is awful no doubt, waking in a sweat burning up...
I have learned over the years, to just let my body do what it needs to do... if it needs to sleep, sleep no matter what time of day or night.
Forgive and accept that you are not "normal" and then much of the suffering is alleviated. Resistance is futile... For me anyway, just understanding that things are different for us Lymies is half the battle.
I used to beat myself up, struggle, fight and in general TRY to be like everyone else. Can't. My family would pressure me to 'Not be a victim, or grow up or just get over myself, work thru the pain, go to bed early', whatever. It doesn't work that way. Go with your body's rhythmns because the more you resist the worse it gets. Blessings, *BugBit*
Posts: 116 | From Bisbee, AZ USA | Registered: Sep 2005
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Dear Bugbit,
I think everything you said is perfect advice. I will try to follow it myself.
Thank you for sharing your wisdom.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
richedie
Frequent Contributor (1K+ posts)
Member # 14689
posted
I don't know how but after sleeping 12 hours on Saturday night, I have been sleeping a bit better, 7 hours last night. I have been taking two capsules of Dr. Weil's Sleep Support Formula and it helps!
-------------------- Mepron/Zith/Ceftin Doxy/Biaxin/Flagyl pulse. Artemisinin with Doxy/Biaxin. Period of Levaquin and Ceftin. Then Levaquin, Bactrim and Biaxin. Bactrim/Augmentin/Rifampin. Mepron/Biaxin/Artemisinin/Cat's Claw Rifampin/Bactrim/Alinia Plaquenil/Biaxin Posts: 1949 | From Pennsylvania | Registered: Feb 2008
| IP: Logged |
I take a diuretic which is mainly the cause of the problem along with the arm and leg restlessness that has surfaced lately.
The restlessness has abated since my Doxy got upped.
I think I'm going to switch the time of my diuretic so it is out of my system by bedtime.
My husband tries to make me laugh about it.
He tells everyone that since we have wood heat in our home and he's a sound sleeper, me not being a good sleeper means I'm stoking the fire during the night instead of him.
He finally took pity of the bags under my eyes and started stoking during the night.
I use tylenol pm and sometimes take an extra benedryl about two hours before I go to bed.
For the arm and leg discomfort I take half an Ultram.
Ultram + tylenol=Ultracet.
Last night I slept better than I have in a long time after my first doses of 200mg of Doxy bid.
In fact, I was exhausted at 10pm and went to bed.
I napped till 10:45 then woke up at 5:30 when the dogs needed to go out whether it was snowing or not.
I'm not a Doctor either, just a tired nurse of 33 years with bad feet and 56 years of life experience.
-------------------- Why don't they make Front Line for humans? Think about it! Posts: 78 | From North Eastern Missouri | Registered: Oct 2009
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic