Topic: Looking for ways to get a good night's sleep
kam
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posted
My primary care doc was giving me samples of Lunesta.
IT was working.
She ran out of the samples and wrote a prescription for me. Insurance denied it.
AT 6.00 a pill, can't afford it on my budget. I take it nightly.
I am looking for ways to get a good night's sleep.
I tried the allergy meds the pharmacist recommended because it has drowsiness as a side affect.
No affect on me.
I also took melatonin tonight. I am still awake at 4:30 am.
I have tried podi patches, but can't afford them monthly and they did not help with sleep.
I know this topic has come up several times, but my lyme brain needs to deal with it this way.
[ 03. April 2007, 06:56 PM: Message edited by: kam ]
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treepatrol
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Sounds like your adrenals are in hyper drive?Have LLMD check them.
and as far as "I also took melatonin tonight. I am still awake at 4:30 am."
Did you try time release? and what was the dose? 3.5mg or 5mg try 5mg time release and take 1/2hr before bedtime go to bed shut all lights out light is key to melatonin no light equils it working. Hope this helps.
-------------------- 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.
CaliforniaLyme
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posted
My first great LLMD used and uses amtriptyline (elavil) in very small doses for this with Lyme patients- in higher doses it is an anti-depressant but at low doses helps with sleep-
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All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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posted
Elavil is a good idea...or trazodone. It can be found in generics.
Also, ditto what tree said. At one time, I was taking 9mg of time released melatonin. Now I take 3mg and I'm not even sure I need THAT.
you can find Source Naturals brand of time released at www.vitacost.com
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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TerryK
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You can get lunesta at costco pharmacy for $3.85 per pill for 1 mg, still under $4 for 2 and 3 mg. You don't have to be a member to use the pharmacy. Might still be over your price range but you might look around at some of the programs that are available to help pay for prescription meds. They have been listed here numerous times.
Melatonin has no sedative effect for sleep if a person's melatonin levels are normal.
5-htp helps some people. Benadryl can also help some people. Last time I tried benadryl, it kept me awake but melatonin and 5-htp help me sleep.
Have you had a sleep study? I mention it because some people have specific problems like sleep apnea or restless leg syndrome that can be helped and are usually paid for by insurance if you have insurance.
I feel for you. Not being able to sleep is really awful and sets one up for all kinds of health problems. Terry
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kam
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OK...gleeming from the field of knowledge and trying to recall what I read from the pea brain of lyme.
1. Thanks for reminding me about the adrenals. MY LLMD suggested I take isocort and cordimmune. Isocort for the adrenals.
I also purchased something that is supposed to help with sleep from isocort company.
I was given some extra cash this month so was able to get these things.
2. Primary doctor's office gave me samples of sonata. 6 nights worth. Will give me more if it works. I hope it works.
3. Benadryl...I took WAl\dryl which someone else picked up for me at WAlgreens. I thought that was their version of benadryl. I took it last night. Didn't work.
4. Melatonin 5 mg Not time release.
5. Thinking i will just take sonata tonight.
6. Sleep study would be good. I went through a few years when I had restless leg syndrome, but didn't know what it was. Didn't even go to docs.
7. A sleep study just might help. Not sure if insurance will provide it.
8. Asked a friend to get me some 5HTP yesterday, but she got the other things instead. Will try to get 5 HTP when I am feeling better. It has helped me in the past...years ago.
I am amazed how easily things affect me and how the moods change.
It certainly helps to come to this board. Thank you
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kam
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posted
Sonota did not work. I slept for two and a half hours and I am awake now and can't get back to sleep.
Just took some melotonin.
Melatonin is not working. AT least I know my melatonin levels are OK.
What to do for tomorrow night?
I see that lunesta has a free trial offer. But, my printer does not work with this old computer.
I am hoping I will be functioning well enough to go to the library tomorrow and use their computers to print it out.
and I am hoping the senior van will be able to pick me up and take me to the pharmacy...or
I could just cruise on down to the health food store in my power chair if I am functioning well enough. It is closer and I don't need the senior van.
I could try the 5HTP.
[ 04. April 2007, 04:19 AM: Message edited by: kam ]
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treepatrol
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posted
kam sleepy head what other drugs are you on right now???
-------------------- 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.
beachcomber
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posted
If meds and herbs aren't working then, I can suggest that you try some relaxation and breathing techniques. Also, get sleep whenever you can, when the urge hits you, if at all possible.
I fall asleep around 10:00 and am wide awake somewhere between 1:30 and 3:30. I often can't fall back to sleep. My ND offered Ambien. My MD suggested otherwise, as it can have strange side effects.
I have learned not to get stressed out about the sleep issue. I have lavender oil, nice music and a meditation CD. I either stay in bed and relax to these or, I get up and start my day. I will work and do yoga, have some green tea and a nice breakfast. No one else is awake and I actually enjoy the time now. Later in the day, I usually crash and will grab a power nap for 20 minutes. I can work for a couple more hours after that. It takes some creative scheduling. But, it is cheaper than meds.
After about 4 days in a row of this, my body is pretty tired and will generally give me the gift of a full 8 - 9 hours of sleep. That is a treat I now look forward to.
Try to find positive ways to deal with your waking hours. Be kind to your body by limiting the stress that your head is wrapping around this. I know, it all sounds pretty 70s but, it HAS helped me. These were all suggestions by my MD, Cranialsacral Therapist, and a friend who survived chemo using relaxation techniques.
Jellybelly
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posted
I've tried a lot of stuff for sleep. Elavil turned out to be my "dream come true". Really cheap too!
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Marz
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Kam, I sometimes take a third of a tylenol pm tablet. I use a scissor to break it.
A whole one keeps me awake, but a third, or sometimes a half is just right.
kam
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posted
tree patrol,
I am on amoxy, ketek and a sulfur drug which I think I will be changing to doxy soon. (Need to look at prescription from doc..can't recall)
I was able to get to the library and print out the paper work for lunesta. I have 7 nights taken care of.
Will gleem through the posts and see what to do after that.
I have had sleep problems since this hit in 2001. I have put off taking anything because I felt the abx was enough on the body.
But, not sleeping is not good for the body either.
I really liked being able to be more human while I was on the lunesta.
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Andie333
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posted
Kam,
Just a thought, but calcium and magnesium both help me sleep. I take them both about a half hour before bed.
Too, I drink a tea called Tea for Sleep. That's got valerian in it, and that helps me. It's soothing, and it really relaxes me.
Finally, I use an essential oil called Peace and Calming. It's expensive, but you only use a tiny bit of it, and my little bottle has lasted me months and months.
I put the oil on my wrists, temples and just a dot on my chest.
Oh, there is one other thing: I bought one of those white noise machines. I live in the city, and those sounds can sometimes keep me too alert. The noise machine makes a nice, steady sound.
I hope you're able to get some sleep!
Andie
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treepatrol
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quote:Originally posted by kam: tree patrol,
I am on amoxy, ketek and a sulfur drug which I think I will be changing to doxy soon. (Need to look at prescription from doc..can't recall)
I was able to get to the library and print out the paper work for lunesta. I have 7 nights taken care of.
Will gleem through the posts and see what to do after that.
I have had sleep problems since this hit in 2001. I have put off taking anything because I felt the abx was enough on the body.
But, not sleeping is not good for the body either.
I really liked being able to be more human while I was on the lunesta.
Yep lyme I also have? had? babs and some other infections My sleep was pretty messed up still is on and off espcially during the mepron biaxin xl tretment still recovering form that anyway I use to have really hard time falling asleep then when I would fall asleep I would wake up at 3am but since getting treated for lyme & coinfections and taking 500mf magnesium a day and complex B Vitamin every day and cq10 every other day and melatonin every other day was everyday for a couple of weeks sleep has greatly improved,I also when I take melatonin take it about 1/2hour bfore bedtime and when in bed I turn a fan on and try to concentrate on that sound and not think also NO light in my room at all must be totally dark.
Its helped greatly
-------------------- 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.
AliG
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posted
LLMD just had me try Rozerem. It didn't work. It acts on melatonin receptors, so I tried it with Melatonin. I thought it worked. I tried the Melatonin alone. It didn't work. I tried them together again. It seemed to work. I continued for several nights and it wasn't working.
I remembered that I used to take 2 Calcium & Magnesium before bed with milk & it used to help me, so I tried it. It was working like a charm until my snoring dd decided she HAD to sleep with me last night. I'm thinking about trying the CalMag with Melatonin tonight.....
BTW- CalMag is also good for restless legs.
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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lightfoot
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Hi Kam!
You've had lots of good suggestions here.
Creating complete dark with an eye mask does a lot for me along with ear plugs. This had been suggested to me before but it just seemed too simple but it is a great help. It helps to reset our biological clocks.
Also breathing, affirmations (prayer), and meditation and as someone mentioned......get into the mode of not stressing out about it....not easy but it is an attitude to be cultivated.
Swwet dreams....
Healing smiles....lightfoot
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kam
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CAn't take in what is posted right now. Will try later.
Nurse from primary docs office just called. She is faxing a prescription for restoral (sp?)
She said it could take up to 3 week before it helped.
She also said insurance will only allow 3 months.
But, did say to see the guidance people here for help.
One of their counselors was here this am. I have told her about the difficulty with sleeping and she has not been helpful at this time.
Will try again.
Don't know if I mentioned I was able to sleep the past two nights. 10 hours one night and 9 the next.
Due to lunesta. Able to get 7 free pills from form off of web.
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Greatcod
Unregistered
posted
Restoril put me on my butt with one pill. Its available as a generic, so you might find a very low cost supplier (Wal-Mart). Not a real good idea to use these night after night after night. You'll end up needing to increase the dosage, or getting hooked.
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kam
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Glad to hear it worked for you. I am concerned about needing meds to sleep.
But, after battling sleep since 2001, I am more concerned about not getting the rest my body needs.
Hopefully, the adrenals stuff and immune stuff the LLMD has me taking will balance things out so I will not need sleep meds eventually.
Or I will find some other goodie to help instead of poison to the system...I assume the drugs help you sleep but are also not helping something else.
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Glad to hear lunesta is working for you. What dosage are you taking?
You have many good suggestions here. Everyone if different. Perhaps you could share them with your dr and they could help you decide what to try next.
Melatonin was the one that worked for my daughter. We tried many, many meds!
Some meds would work, but at higher than recommended dosages! The pharmacist suggested trying Advil PM with the sleep med. It helped for awhile.
Last llmd visit he mentioned she could try provigil in the daytime (take early). That helped some of his lyme patients sleep better at night. Have not tried it yet, but will soon. They have a free 7 day trial offer now.
Let us hear how you are doing!
MommaK
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GiGi
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To find what's keeping you awake or waking you up, it helps to learn about our Biological Clock.
1-3 AM Liver 3-5 AM Lungs 5-7 AM Large Intestine 7-9 AM Stomach 9-11 AM Pancreas 11 AM - 1 PM Heart 1-3 PM Small Intestine 3-5 PM Bladder 5-7 PM Kidneys 7-9 PM Circulatory System 9-11 PM Endocrine System 11 PM - 1 AM Gall Bladder
I. E. If you keep waking up at 1-3 AM - when our liver is most active and trying to dump, you might pay attention to some liver support.
Take care.
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kam
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This is interesting. I am trying to recall how my sleep pattern was or lack of it.
I think I am taking 3 mg of lunesta but only have 5 pills left.
Right now, I am getting second hand smoke through the vents in the apartment. It makes my eyes water and I don't like the smell.
Going to see if I can close the vents and open the windows for a bit.
Got it. Hope that helps. That was exhausting, but at least I was strong enough to get on a chair to close the vents in the ceiling. Couldn't close bathroom vent so I just closed the bathroom door.
It also comes through the vent over the stove.
Not good.
Back to lunesta I wonder if I take a half of a pill if I would sleep well. This would at least give me more time to find something else that works.
I like the idea of finding the cause. But, it seems like I am usually up all night when I can't sleep...until about sunrise. Then I fall asleep until about 7:30 or 8 am.
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posted
Kam, you might consider a homeopathic remedy for the adreals/cortisol. They have something that puts me right asleep. I had high cortisol levels from midnight on. Of course, I ran out, and never got it refilled and now I cannot sleep. Arrgh. Sorry I don't have the name, but it is not expensive to get you cortisol levels tested.
Good Luck, Ernie
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Health
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posted
When I had this, I took Calcium/Magnesium, 2 tablets before bed. I was not on antibiotics though back then,
My sleeping problem was not that bad, so this worked.
When I am stressed, really stressed, I have trouble falling asleep.
I was given a sleeping pill, it made me walk into walls, even 1/2 pill, took 2 days to recover, so I could not take those.
Trish
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kam
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Ernie,
I just went back on isocort which is to help me with adrenals.
But, I have taken it during the past year of not getting any sleep so that wasn't a solution.
Trish,
I will try the Cal/Mag before bedtime. I take 4 capsules a day of it. I find I no longer am having the problem with the feet doing that weird thing while on the CAl/mag. When I run out of the CAl/mag, the feet start to do that weird thing again so I am putting two and two together.
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posted
Try checking to see if your insurance company has anything else they will authorize. For instance, some may not authorize lunesta but will authorize ambien. Also if denied they may with a doctor's authorization approve. Your doc may have to call or write them.
This is my number one herbal recommendation. It is amazing:
Yogi brand (specifically this brand bc they are high quality and potent) Kava tea ...two teabags in half cup water (only half cup so you don't have to wake up to urinate).
other options:
Tryptophan (back on market after much ballyhoo..the amino acid itself was not the cause of the deaths in early 90's it was a contaminated product)
Passionflower
Skullcap
Hops
Valerian
Non-herbal remedies:
Tylenol PM
Sweet dreams~ Pom
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mojo
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"Simply Sleep" by Tylenol works well (I can't take it right now, though due to a drug interaction) It doesn't have the Tylenol in it - it's just for sleeping.
I've also been using Ativan and Xanax - I've always had anxiety issues. I take an Ativan about an hour before bed with a timed released Melatonan and then when I wake up during the night I take a half a Xanax. When I'm herxing I sometimes need the other half.
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kam
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I am so glad Doc Dave is getting that computer to me and I will be able to print all of this out.
With lyme brain, I need to get my highlighter out during those windows of opportunity when I can read and gleen through all of this.
Thanks for the info.
I have learned i need it to be dark too. No lights.
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stymielymie
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kam: cheap method of sleep therapy
use on head twice before sleep docdave it will be there soon.
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kam
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LOL.
Another way I use to go to sleep was to listen to Chuck Swindol's message of the day on the computer.
I can't do that with the computer I currently am using.
But, I thank Chuck for putting me to sleep many nights.
IF I woke up in the middle of the night, I would just listen to his message again. Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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mojo
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Stymie: You just made my headache worse (both by laughing and by just looking at that huge hammer) It was definately worth it.
posted
Gigi thanks for your Chinese medicine post... I had been waking up at 8 every morning (too early for my bedtime) and it makes sense to me. I use to wake up with kidney stuff at 4 a lot.
I had a really good long nap today and it was the first good nap in months. I slept most of the day but needed it after a stressful move.
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kam
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Went back and read GiGi's post. Between 7 and 9 pm is when I get the heat waves. It hasn't been happening lately. I have been taking a certain abx that is supposed to help with that.
But, I find it interesting that is when the circulation system is at work.
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kam
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WEll, the restoril generic worked last night. I hope it works tonight too.
I was doing so well that I stood on my feet and scrambled a couple of eggs. I then sat at the table and ate them.
I wasn't feeling very well afterwards. I wondered if it was the meds. But, I think it was because I was asking too much of my body. It is rare that I am able to scramble eggs and when I do I need to be sitting in the power chair and then go to the recliner to eat them.
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minoucat
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kam, a lymie friend who has horrible sleep problems is using the Delta Sleep 2.0 CD. She loves it.
She still wakes up several times a night (rather than 6-7 times a night), but leaves the headphones on and turns the CD on, and goes back to sleep immediately.
It costs about $12. I'm buying one tomorrow, and will let you know how it works.
Good luck
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
kam
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I am interested in hearing how that works for you.
In the past, I have fallen asleep listening to Chuck Swindoll. When I woke up at night, I would listen to him again to fall asleep.
But, that was aloost 2 years or so ago. It seemed it just kept getting more difficult of get to sleep.
Something natural I would think would be better for the health.
Had one more pill of lunsta. Took it at 9 along with a hot epsom salt bath. Think I fell asleep around 10 and then woke at 4:30 to use the bathroom.
Just like GiGi's post...time for the bladder. HA!
Hoping I can fall back to sleep. Need to leave house around 7 am today or at least be ready by then.
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I was on them, and they didn't help in the long run.
Then I developed my own sleep method:
- Going to sleep early. - Making sure room is totally dark. - Making sure everyone in the household knows I need to sleep. - Taking Vit-B6. - Drinking a small cup of, e.g., Yogi bedtime tea about an hour before sleep time. - Forcing myself to NOT think about all the problems in my life. - Forcing myself to think about something benign, e.g., like my breathing or telling myself over and over again, "I'm gonna be better, I'm gonna be better, ..." - Don't watch or do anything upsetting or exciting just before you go to sleep. Instead, do somethign calming, like meditating, reading the bible, etc.
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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